UCL Great Ormond Street Institute of Child Health


Great Ormond Street Institute of Child Health



ECHILD project publishes new guide to the ECHILD Database

29 November 2021

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A new resource for researchers interested in the ECHILD Database has been published in the International Journal of Epidemiology. The ECHILD Data Resource Profile explains what information the database contains and discusses its key strengths and limitations for research that explores how children’s health affects their education, and how their education affects their long-term health.

The ECHILD Database brings together de-identified health, education and social care data for all children and young people in England who were born since September 1995. It includes linked data for around 14.7 million people. 

The ECHILD Database will be available to researchers next year. 

You can read more the ECHILD Data Resource Profile in the International Journal of Epidemiology here

Recently published research from ECHILD team members shows that young people are more likely to be admitted to hospital for stress-related reasons during term time than the holidays

23 November 2021

echild group of young people talking

Researchers analysed de-identified hospital data for 571,388 young people in England and found that 1 in 13 girls (8%) and 1 in 25 boys (4%) were admitted to hospital for stress-related reasons between the ages of 11 and 17 years. Most stress-related hospital admissions related to mental health problems (38%) or to abdominal pain, headache or other pain (35%).

Rates of stress-related hospital admissions, including mental health problems, were greater during school terms than the holidays which suggests that the school environment may be a contributing factor. Rates were particularly high for girls aged 14- and 15-years-old. Schools interventions to promote pupils’ resilience and reduce mental health problems may need to be targeted to and adapted for high-risk groups. 

Stress-related hospital admissions might be an opportunity to tackle the early signs of mental health issues among young people through effective and appropriate mental health interventions, which could ultimately reduce the chance of more serious conditions developing in later life.

Dr Ruth Blackburn, lead author of the study and member of the ECHILD study team, says “The stress-related hospital admissions that we looked at in our study are just the tip of the iceberg of a very common and complex problem among teenagers, particularly girls. Most emergency healthcare presentations by teenagers are to A&E departments or GPs which haven’t been included in our analysis.”

You can read more about this work in a recently published, free-to-read article in BJPsych Open here

Recently published research from the ECHILD team members shows that School exam results were the same for children regardless of having had standard or modified formula as a baby 

15 November 2021

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Researchers linked data from seven randomised controlled trials to children’s performance in school exams at ages 11 and 16 and found no clear differences in their results, suggesting no long term benefits of the tested modified formula milks on brain (cognitive) development.

Breastfeeding is best for infant nutrition, but breastfeeding rates beyond six weeks are low in many countries. Instead, infant formulas (breast milk substitutes) are widely used to supplement or replace breastfeeding and are consumed globally by more than 60% of infants aged less than six months.  

It has been suggested that certain nutritional modifications to formula milk promote cognitive development, but trial evidence that modified formulas benefit long term cognitive development is inconclusive due to high drop-out of participants over time. The researchers addressed this problem by analysing results from seven historic randomised trials of nutritionally modified infant formula involving 1,763 participants. These trial data were linked to school records for 91% of participants, focusing on what effect (if any) the formula had had on their scores for national mandatory exams in maths at 16 years (GCSEs). They also looked at performance in English exams at age 16 years and maths and English at age 11 (Key Stage 2), eligibility for special educational needs support and achieving five or more GCSE grades of C or higher.

“In summary, differences in academic performance between modified and standard formulas were consistent with differences measured in the original trials and in the external literature; that is, no benefit of the infant formula modifications on cognitive outcomes,” they write.

“This study sets a precedent for other trials and cohorts to use linkage of historic trials to administrative data to address high participant drop-out over time and answer important questions about long term outcomes in children and young people,” they add.

New publication from the ECHILD and NIHR CPRU team - Children with chronic health problems and adolescents receiving support from social care had greater deficits in planned hospital care during the pandemic than their peers 

08 November 2021

echild children with bags and face masks

Last week a new report by ECHILD researchers was published which assessed the impact of the pandemic on contact with hospitals by children and young people with additional health, educational or social needs and their peers. 

The ECHILD team, with the NIHR Children and Families Policy Research Unit, analysed linked administrative data in the ECHILD Database to look at changes in the rates and planned hospital outpatient attendances and admissions, and unplanned hospital admissions during the first nine months of the pandemic. 

The researchers focused on two groups of children with additional needs: children aged 0 to 4 years who were born too early or too small or had a chronic condition; and secondary school pupils who received special educational needs support or children’s social care services. 

The children and young people with additional needs bore large and disproportionate deficits in hospital contacts during the first nine months of the pandemic compared with their peers. These deficits were greatest for children with multiple additional needs. As the pandemic progressed, there was some ‘catch-up’ in planned hospital admissions for children aged 0 to 4 years and in outpatient attendances for infants.

Deficits in planned hospital care could have consequences for children because of diagnoses or treatments that were delayed or foregone. Childhood is a time of rapid development and delays in treating health issues may hold a child back. Deficits in unplanned hospital admissions may be positive (because fewer children needed care for infections or injuries, for example), but could also reflect unmet health needs.

The report’s findings indicate a need for targeted ‘catch-up’ funding and resources for child health, particularly for children with additional needs who were affected disproportionately. For example, secondary school pupils receiving special educational needs support or social care services may need to be prioritised for face-to-face outpatient care as it is unclear how effective remote care is for these children. More research about how delays to treatments for childhood conditions impact children’s outcomes is also needed.

The full report “Changes in hospital contacts during the COVID-19 pandemic among vulnerable children and young people” is available to download from UCL’s Children and Families Policy Research Unit website.

This project received funding support from National Institute of Health Research, Administrative Data Research UK and Health Data Research UK. 

New publication from the ECHILD team - Linking education and hospital data in England: linkage process and quality

20 September 2021

echild image of children in classroom

Last week saw a new publication from the ECHILD team.  The "Linking education and hospital data in England: linkage process and quality" paper has been published in IJPDS, more information can be found here and the paper itself is available here.

The educational and health records for nearly all (>95%) school children in England have for the first time, been successfully linked to create an anonymised, securely held database for research. This ECHILD (Education and Child Health Insights from Linked Data) database will enable a significant improvement in the scale and depth of research into the relationships between health, education and social care across the lives of millions of children. However, researchers will need to be aware that linkage rates were not equal for groups of children from different backgrounds. 

Records for all children born in four specific years and enrolled at state schools in England were studied and showed improvements in linkages rates over time - from 92% for those born in 1990/01 to 99% for children born in 2004/05. Advances in data quality through the introduction of the national Personal Demographics Service in 2004, the online system to register births from 2009, and better-quality data returned by hospitals, contributed to these improvements.

However, researchers found lower linkage rates for children from ethnic minorities and those living in more deprived areas. This might reflect poor recording of non-traditional names, or more mobility in disadvantaged groups. First names, surnames, date of birth and postcodes were the identifiers used to link the children’s education records with their hospital records.

These differences in linkage accuracy are relatively small but they highlight the need for health, welfare and educational services to continually improve data quality. And they show that poor recording of key data could have consequences for policy. For example, the data could underestimate health care needs in black or mixed race groups because hospital records in these groups are less likely to link to education records than for white pupils.

Researchers addressing questions relating to ethnic minority or deprived groups need to consider therefore whether to adjust for missing data among these groups due to missed links. Statistical techniques can be used to account for missed links in analyses.

Overall however, the high rate of successful linkages means the ECHILD database offers a vital resource for research that will help policy makers and services understand how health and educational needs and outcomes vary for children from different backgrounds and in different areas.  By measuring differences between such groups of children, ECHILD can generate evidence for policy makers about inequalities in health and education, as services recover from the impact of COVID.

The database cannot be used by anyone to identify individuals. All personal information such as names and postcodes have been removed and it can only be accessed by approved researchers in a secure environment at the Office for National Statistics.

ECHILD at the Institute for Government's Data Bites event

10 September 2021

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This week Prof. Ruth Gilbert introduced ECHILD at the Institute for Government's Data Bites event focused on children and young people's data. 

Ruth introduced ECHILD’s alignment to cross-government policies that recognise the importance of intervening early to support children and families to give children the best start and maximise their capabilities.

Children need support from healthcare, schools and social care, but until now these data have not been joined up.  The ECHILD database is being used to find out how these services support vulnerable children and the impact of the COVID-19 pandemic and lockdowns on children’s health and education in the longer term.   Please find a recording of the Data Bites event above.

ADR UK publish the ECHILD Stakeholder Event Report 

10 August 2021

echild child reading book

In April the ECHILD project brought together organisations representing children’s interests at the ECHILD Stakeholder Event.  The purpose of the event was to provide an opportunity for stakeholders to ask questions about and share their views on the ECHILD Database and its use in future research for the public benefit.   Today ADR UK has published the report from the event, highlighting the key messages from government and stakeholders regarding the ECHILD Database.  This report can be found here.

In addition, Louise Mc Grath-Lone, a researcher on the ECHILD Project has been giving her thoughts on the strengths of this administrative data resource for research that explores the health and education outcomes of children and young people in England.  Louise reflections can be found here on the ADR UK website.

How can we tackle racism in data linkage? 

01 June 2021

Image of older children relaxing in park

The ECHILD Database links school and health records for children in England creating a vast, anonymised database that can be used to study the links between a child’s education and their health. 

But when looking at which groups of children have linked records in the ECHILD Database, the research team from the ECHILD project discovered that those from ethnic minorities were less likely than their peers to have records that were successfully matched.

This type of ethnic bias in data linkage happens when records are less likely to be linked for particular ethnic groups. It is a well-known problem and is concerning because it misrepresents, and could even underestimate, the health needs of ethnic minority groups.  

The way that information is collected can contribute to ethnic bias. For example, data collection systems are usually designed to fit Western name standards (a first, middle, and last name) and don’t account for cultural differences in name structures, like Hispanic groups who can have multiple first or middle names, and often two surnames. 

This can mean that ethnic minorities are more likely to have missing or incorrect names recorded. And, if matching records requires exact agreement on names, it can lead to ethnic bias in data linkage. 

In the ECHILD project, the research team are taking steps to tackle this type of ethnic bias in data linkage. 

Dr Katie Harron from the UCL Institute of Child Health says “By relaxing the rules around exact matching on name when creating the ECHILD Database, we were able to improve linkage rates between health and education records for ethnic minority groups. This will help to reduce the bias that arises through missing records from a particular ethnic group. But, we still need to think carefully about how we analyse the data to compensate for any biases it still contains.”

Dr Louise Mc Grath-Lone from the UCL Institute of Health Informatics adds that “It’s also important that organisations work to improve the quality of the data they collect; for example, by training patient-facing staff about the diversity of name structures and having more inclusive computer systems for recording it”.

To highlight that much more needs to be done to tackle the problem of ethnic bias in data linkage - from how we collect data, to how we link it, and how we analyse it – the ECHILD project team have written a letter published in The Lancet Digital Health, which you can read here.

ECHILD data to study the impact of delayed surgery on children with cleft lip and palate. 

26 April 2021

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Every year, about 1,200 children in the UK are born with a cleft lip or palate, or both. Early treatment to repair the cleft is crucial and surgery, done at one of only a handful of specialist hospital units, usually starts in the first year of a child’s life. 

But the Covid 19 pandemic has delayed many non-emergency medical procedures. Data from the ECHILD project will help identify how that may affect children with orofacial clefts and what that might mean for their future progress at school. 

Previous studies have shown that children born with clefts are more frequently absent from school for medical reasons and their achievement tends to fall a bit below the national average in all areas of learning. 

Using the ECHILD database, linking anonymised hospital and school records for all children in England, researchers will look at treatment for those with a cleft born immediately before, and during the pandemic. They will then estimate how any treatment delays might affect the achievement of these children at primary school. 

“This project is important for several reasons,” says Jan van der Meulen, Professor of Clinical Epidemiology at the London School of Hygiene & Tropical Medicine. “It will estimate the indirect effect of Covid-19 on a specific group of children. But it will also demonstrate how school achievement can be used to evaluate early treatment for children with other congenital abnormalities. And it will help schools gain a better understanding of what can be done to help children with long term medical conditions.”

ECHILD Gestational Age Study

19 April 2021

echild infant hand holding

Preterm babies often go on to have special educational needs. But the extent of those needs isn’t easy to predict. This makes it hard to put the right support in place for them at the crucial early stages in their development, before they go to school.

That’s what the Gestational Age Study, a part of the ECHILD project, is hoping to address.

The ECHILD database, which links anonymised health and school records, will make it possible for researchers to focus on the records of all children born in England before 37 weeks gestation.

Linking health and educational data back in time so children can be followed from birth throughout their school years, they will be able to see the extent to which attainment at school varies in relation to how early a child is born, as well as to their specific health conditions.

Not all preterm children will have poor outcomes at school. But the study, the first done in this way and with such a large number of children, will shed light on why some do better than others.

The results could then be used to inform policy decisions about what kind of support these children are likely to need to give them the best start in life. They will also reveal which children might need extra support to catch up after the COVID pandemic.

“The data will allow us to understand whether children with different conditions relating to preterm birth will need extra support in the early years,” says Dr Katie Harron from the UCL GOS Institute of Child Health. “And that will help everyone involved in their care give them the best preparation possible before they get to school.”


ECHILD Database to offer insight into pandemic’s impact on vulnerable children and teens

13 April 2021

echild child in healthcare setting

Covid-19 has caused widespread disruption in the lives of children and young people. Even more so for those needing extra support for their health or welfare, with reduced access to many of the services they use because of school closures and lockdown.

Just how extensive the pandemic’s impact has been on the health of these children is something researchers from UCL are now assessing using information held in the ECHILD Database.

The ECHILD data, linking anonymised school and hospital records for children in England, includes information about unplanned admissions to hospital and attendance at Accident and Emergency.  

The researchers are investigating how often young people needing support for health, education and social welfare needs have made these sorts of visits to hospitals since Covid-19 broke-out in early 2020. And they want to know whether they attended more frequently than their peers. 

In normal times, children with additional needs are likely to have had a lot of contact with healthcare, possibly for physical or mental health disorders or both. Some children and teens will have received extra help for special needs or from social care. But a lot of this help stopped during lockdown.,

“We think vulnerable teenagers may have been more likely than their peers to have unplanned admission or A&E attendances during Covid-19 because of the disruptions to their support services,” says Dr Louise Mc Grath-Lone,” a researcher at UCL.  “This study will help us understand which groups of children may need more or different support as we move on from the pandemic.”

The researchers will be looking at data for young people aged under 25 during the pandemic and hope to report their findings later this year.


ECHILD project links school and hospital records for 95% of pupils in England

01 April 2021

echild children learning

For the first time, researchers have successfully matched key school and health records for children in England creating a vast, anonymised database that can be used to study the links between a child’s education and their health. 

But while the research team from the ECHILD project now have linked records of 95% of children in the state school system, they have discovered that those from ethnic minorities and from deprived backgrounds are less likely than their peers to have records that can be successfully matched.

The researchers speculate this could be because of inconsistencies in the recording of non-standard or non-English names when children attend hospitals. 

It’s also possible that some of these young people move home frequently, or move between different family carers, so other significant information like postcodes are not always kept up to date. 

The ECHILD team do not have access to individual names and addresses, or any other information that would identify any of the 14.7 million children in the new database. Those details are held securely by NHS Digital, which compiled them from school and hospital records. 

But they can see the ethnic origin of the children and what the level of economic deprivation is in the area where they live. This is what alerted them that children from ethnic minorities – including Asian, Black, Chinese, Mixed and Any other ethnic group, as well as those from poorer areas, are more likely to have gaps in their records. 

Dr Katie Harron from the UCL GOS Institute of Child Health says this new database of linked health and education records is “a fantastic achievement. It will allow researchers to bring together the different pieces of the jigsaw puzzle of a child’s life over time.” 

But she says having this deeper understanding of the quality of the data is a crucial first step. 

“We need to think carefully about how we analyse the data to make sure we’re not perpetuating bias that arises through missing records from a particular ethnic group,” she warns. Missing links to health records could mean that we underestimate health needs for these groups. “There are statistical tools we can use to compensate and it’s important that researchers are aware of the issues so they know which tools to use to overcome them.”

ECHILD project publishes new guide to the ECHILD Database

08 March 2021

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The Education and Child Health Insights from Linked Data (ECHILD) project published a new guide to the ECHILD Database today, which describes what information the database contains, who it includes and how it was created.

The ECHILD Database spans more than two decades and includes linked school and hospital records for around 14.7 million pupils in England. It was created for the ECHILD project but, later this year, other researchers will be able to apply to access the ECHILD Database through the Office for National Statistics Secure Research Service.

Dr Louise Mc Grath-Lone from the Institute of Health Informatics, lead author of the guide, says “The ECHILD Database opens up lots of exciting opportunities for research that explores how children’s health affects their education, and how their education affects their long-term health. We hope this new guide will help researchers who are interested in using the ECHILD Database to understand the types of questions it could be used to answer confidently, bearing in mind its strengths and its limitations”. 

The ECHILD Database User Guide is free to download from the ECHILD project website here: PDF icon The Education and Child Health Insights from Linked Data (ECHILD) Database - An Introductory Guide for Researchers - v1.1.0 March 2021 and from the News and Resources page.

ECHILD project launches new website

14 December 2020

Boy smiling in learning environment

The new website for the Education and Child Health Insights from Linked Data (ECHILD) project was launched today. 

ECHILD is a landmark project that brings together administrative data that is collected by hospitals, schools and social care services for all children in England. 

This newly linked data spans more than two decades and will allow researchers to investigate how children’s health affects their education, and how their education affects their health. 

Professor Ruth Gilbert from the Institute of Child Health, who is leading the ECHILD project, says “Understanding the impact of children’s health on their schooling, and schooling on their health, will help services improve the way they support children and their families”. 

The research team at UCL are currently looking at the impact of the COVID-19 pandemic on children with additional health, education and social care needs. 

Dr Ruth Blackburn says “COVID-19 is increasingly exposing cracks in our society, such as inequalities by ethnicity, wealth, gender, health and disability. The ECHILD project is helping us to identify which groups of children most urgently need support and to develop policies that better meet their different combinations of health, education and social care needs”.

The data used in the ECHILD project is de-identified which means it does not contain any names, addresses, birth dates or NHS numbers so individuals cannot be identified. It is held on the Office for National Statistics Secure Research Service.