Data Resource Profile: The Education and Child Health Insights from Linked Data (ECHILD) Database

The Education and Child Health Insights from Linked Data (ECHILD) Database was established to enable large-scale, longitudinal research that explores inter-relationships across the domains of health, education and social care in childhood and adolescence. The ECHILD Database brings together administrative data from Hospital Episode Statistics (HES) and the National Pupil Database (NPD) for all children and young people aged 0–24 years in England who were born between 1 September 1995 and 31 August 2020. In total, it includes linked HES and NPD records for approximately 14.7 million individuals. The ECHILD Database includes information about hospital admissions, accident and emergency attendances, outpatient appointments and deaths. It also includes information about pupil characteristics, educational outcomes and use of children’s social care services. The data sources included in the ECHILD Database are collected on a regular, ongoing basis and collated to create longitudinal, individual-level records. The baseline year of data collection varies, with some social care data included from 1995, health data from 1997 and education data from 2001. The ECHILD Database will be available to accredited researchers in 2021 by applying to the data providers (Department for Education and NHS Digital). To discuss opportunities for collaboration, please contact the ECHILD project team at [ich.echild@ucl.ac.uk]. The Education and Child Health Insights from Linked Data (ECHILD) Database is a linkable collection of longitudinal, administrative datasets from the domains of health, education and social care for a whole population-based cohort of children and young people in England. The ECHILD Database is de-identified. It does not include any information that could be used to directly identify a person, such as names, addresses, postcodes or dates of birth. Access and outputs are strictly controlled and re-identification of individuals is not permitted. Ethical approval for the ECHILD project was granted by the National Research Ethics Service (17/LO/1494), NHS Health Research Authority Research Ethics Committee (20/EE/0180) and UCL Great Ormond Street Institute of Child Health’s Joint Research and Development Office (20PE16). The ECHILD Database was created as part of the ECHILD project, a research study led by University College London in partnership with National Health Service (NHS) Digital and the Department for Education (DfE). The aim of the ECHILD project is to explore the inter-relationship between health and education outcomes for children and young people in England, particularly for vulnerable groups, such as those with adverse birth characteristics and chronic health conditions. For example, we are using the ECHILD Database to explore the impact of disruptions to health and education services during the COVID-19 pandemic on hospital attendances for children and young people in England. However, the ECHILD Database can be used for a wide variety of analyses, provided they benefit education, health and social care. The creation of the ECHILD Database was funded by ADR UK (Administrative Data Research UK), an Economic and Social Research Council (part of UK Research and Innovation) programme. The ECHILD Database includes all children and young people in England who: (i) were born between 1 September 1995 and 31 August 2020; and (ii) had any record in Hospital Episode Statistics (HES) or the National Pupil Database (NPD). HES and NPD are national administrative datasets covering the whole population of children and young people in England who receive state-funded health, education or social care services, including those who were born outside the country. HES contains records for all hospital activity that is provided or paid for by the NHS in England, including births, inpatient admissions, outpatient appointments and accident and emergency (A&E) attendances.1 NPD contains records related to state-funded education and use of children’s social care services.2 In total, the ECHILD Database includes linked HES and NPD records for approximately 14.7 million individuals. Information is included, where available, from birth up to an individual’s 25th birthday, as this is widely considered the end of adolescence.3 HES and NPD are well-established datasets that collect and collate information on a regular, ongoing basis to create individual-level, longitudinal records. Data within HES and NPD are organized into separate modules and the earliest year of collection (baseline) varies for each module (Figure 1); for example, pupil characteristics are available from 2001 and hospital admissions data are available from 1997. When the ECHILD Database was created in November 2020, all HES and NPD data that were available were included. The most recent time period during which data were available varied by data module due to differences in data collection periods and lags between data being collected and made available for research (Figure 1); for example, information related to social care was available up to 31 March 2019, whereas information related to hospital admissions was available up to 31 March 2020. Currently, the ECHILD Database includes information for young people up to the age of 25 years; however, it will be further updated to include more recent HES and NPD data as they become available, thereby enabling follow-up of health records into adulthood. Overview of data available in the Education and Child Health Insights from Linked Data (ECHILD) Database, by academic year: data available in the ECHILD Database as of May 2021. Data availability may change over time. Grey hatching indicates partial coverage. HES, Hospital Episode Statistics; ONS, Office for National Statistics; NPD, National Pupil Database. A. Partial coverage of an academic year, as NPD social care data and HES data are collated by financial year (1 April to 31 March). B. Partial coverage, as HES Accident and Emergency data were experimental and did not have full national coverage. C. Partial coverage, as HES Outpatient data were experimental and did not have full national coverage. D. Partial coverage of an academic year, as ONS mortality data were first linked to HES in January 1998. E. The Pupil Referral Unit Census was subsumed in the School Census Pupil Level from 2013/14. F. The Early Years Census included 3- and 4-year-olds between 2007/08 and 2012/13. From 2013/14, it includes 2- to 4-year-olds. G. Key Stage 3 assessments ceased after 2012/13. H. Partial coverage of population, as between 1 April 1998 and 31 March 2003, Children Looked After Return data were only collected for a one-third sample (i.e. children with a day of birth divisible by 3). i. Linkage between education and social care modules of NPD began in April 2006 for the Children Looked After Return and in April 2009 for the Child in Need Census Overview of data available in the Education and Child Health Insights from Linked Data (ECHILD) Database, by academic year: data available in the ECHILD Database as of May 2021. Data availability may change over time. Grey hatching indicates partial coverage. HES, Hospital Episode Statistics; ONS, Office for National Statistics; NPD, National Pupil Database. A. Partial coverage of an academic year, as NPD social care data and HES data are collated by financial year (1 April to 31 March). B. Partial coverage, as HES Accident and Emergency data were experimental and did not have full national coverage. C. Partial coverage, as HES Outpatient data were experimental and did not have full national coverage. D. Partial coverage of an academic year, as ONS mortality data were first linked to HES in January 1998. E. The Pupil Referral Unit Census was subsumed in the School Census Pupil Level from 2013/14. F. The Early Years Census included 3- and 4-year-olds between 2007/08 and 2012/13. From 2013/14, it includes 2- to 4-year-olds. G. Key Stage 3 assessments ceased after 2012/13. H. Partial coverage of population, as between 1 April 1998 and 31 March 2003, Children Looked After Return data were only collected for a one-third sample (i.e. children with a day of birth divisible by 3). i. Linkage between education and social care modules of NPD began in April 2006 for the Children Looked After Return and in April 2009 for the Child in Need Census The HES data included in the ECHILD Database contains information from hospital records for all NHS patients in England, including demographics and standardized codes for diagnoses, symptoms and procedures relating to the care they have received.4 HES data are collected by NHS Digital from care providers and are curated on an ongoing basis in four modules related to different aspects of hospital care. The HES Admitted Patient Care (APC) module records hospital admissions and treatment that requires the use of a hospital bed, including births and day cases.5 The HES Critical Care module records treatment for the subset of admitted adult patients where constant support and monitoring in adult designated wards is required to maintain at least one organ (i.e. an intensive care or high dependency unit). The HES Accident and Emergency (A&E) module records attendances at A&E departments, including some walk-in centres and minor injury units. The HES Outpatients module records all outpatient appointments at English NHS hospitals and the independent sector (if commissioned by the NHS), regardless of whether the appointment was attended or not. Since January 1998, HES data have been routinely linked to Office for National Statistics (ONS) mortality data.6 This mortality information is also included in the ECHILD Database. Table 1 illustrates the range of health-related HES variables that are included in the ECHILD Database. Selection of key health-related variables from Hospital Episode Statistics included in the Education and Child Health Insights from Linked Data (ECHILD) Database Age Sex Ethnic group Diagnoses (up to 20)a Operations (up to 24)a Operation dates Consultant specialty Middle Super Output Area Local authority Clinical commissioning group Index of multiple deprivation decile Critical care start date Critical care discharge date Number of days of support by organ group Discharge destination Age Sex Ethnic group Type of attendance Mode of arrival Treatments (up to 12)a Duration to treatment Local authority Clinical commissioning group Index of multiple deprivation decile Age Sex Ethnic group Type of appointment Outcome of appointment Medical staff type seeing patient Duration of elective wait Local authority Clinical commissioning group Index of multiple deprivation decile Month and year of death Underlying cause of death Age Sex Ethnic group Diagnoses (up to 20)a Operations (up to 24)a Operation dates Consultant specialty Middle Super Output Area Local authority Clinical commissioning group Index of multiple deprivation decile Critical care start date Critical care discharge date Number of days of support by organ group Discharge destination Age Sex Ethnic group Type of attendance Mode of arrival Treatments (up to 12)a Duration to treatment Local authority Clinical commissioning group Index of multiple deprivation decile Age Sex Ethnic group Type of appointment Outcome of appointment Medical staff type seeing patient Duration of elective wait Local authority Clinical commissioning group Index of multiple deprivation decile Month and year of death Underlying cause of death HES = Hospital Episode Statistics; ONS = Office for National Statistics; N/A, not available. Information on diagnoses, treatments and procedures for each episode of care is recorded by clinical coders based on patient care records and/or discharge summaries using standardized codes. In the Admitted Patient Care, Critical Care and Outpatient modules, diagnoses are recorded using the International Classification of Disease (ICD) version 10, and treatments and procedures are recorded using the Office of Population Censuses and Surveys (OPCS) version 4. In the Accident and Emergency module, bespoke codes are used to record diagnoses and treatments14; however, these are much more limited than ICD-10 and OPCS-4 codes. Selection of key health-related variables from Hospital Episode Statistics included in the Education and Child Health Insights from Linked Data (ECHILD) Database Age Sex Ethnic group Diagnoses (up to 20)a Operations (up to 24)a Operation dates Consultant specialty Middle Super Output Area Local authority Clinical commissioning group Index of multiple deprivation decile Critical care start date Critical care discharge date Number of days of support by organ group Discharge destination Age Sex Ethnic group Type of attendance Mode of arrival Treatments (up to 12)a Duration to treatment Local authority Clinical commissioning group Index of multiple deprivation decile Age Sex Ethnic group Type of appointment Outcome of appointment Medical staff type seeing patient Duration of elective wait Local authority Clinical commissioning group Index of multiple deprivation decile Month and year of death Underlying cause of death Age Sex Ethnic group Diagnoses (up to 20)a Operations (up to 24)a Operation dates Consultant specialty Middle Super Output Area Local authority Clinical commissioning group Index of multiple deprivation decile Critical care start date Critical care discharge date Number of days of support by organ group Discharge destination Age Sex Ethnic group Type of attendance Mode of arrival Treatments (up to 12)a Duration to treatment Local authority Clinical commissioning group Index of multiple deprivation decile Age Sex Ethnic group Type of appointment Outcome of appointment Medical staff type seeing patient Duration of elective wait Local authority Clinical commissioning group Index of multiple deprivation decile Month and year of death Underlying cause of death HES = Hospital Episode Statistics; ONS = Office for National Statistics; N/A, not available. Information on diagnoses, treatments and procedures for each episode of care is recorded by clinical coders based on patient care records and/or discharge summaries using standardized codes. In the Admitted Patient Care, Critical Care and Outpatient modules, diagnoses are recorded using the International Classification of Disease (ICD) version 10, and treatments and procedures are recorded using the Office of Population Censuses and Surveys (OPCS) version 4. In the Accident and Emergency module, bespoke codes are used to record diagnoses and treatments14; however, these are much more limited than ICD-10 and OPCS-4 codes. The ECHILD Database also contains information related to education and children’s social care from the NPD. The NPD is made up of several modules that are collected by the DfE from schools, local authorities and examination awarding organizations on an ongoing and statutory basis.7 The NPD includes four education census modules that collect information about the characteristics of pupils in different educational settings (Table 2). These pupil characteristics include age, gender, ethnicity, special educational needs (SEN), and free school meals (FSM) eligibility. Pupils are eligible for FSM if their parents are in receipt of certain mean-tested benefits, and eligibility is often used in research as a proxy for income disadvantage.8 The education census modules do not collect information for the estimated 7% of children in England enrolled in a private school,9 0.1% in a hospital school (authors’ calculation from DfE statistics)10 or 0.7% who are home educated (authors’ calculation from Office of the Schools Adjudicator statistics).11 These children will have incomplete educational information in the ECHILD Database; however, the vast majority of children in England (at least 92%) will have some educational information recorded in the ECHILD Database. The NPD also includes information on educational outcomes with modules related to absences, exclusions (whereby a child is temporarily suspended or permanently expelled from school), attainment in national assessments and examinations, and participation in post-16 education. In England, participation in education is compulsory up to age 18; however, after the age of 16 this can include a combination of education, apprenticeships, training and part-time work. Overview of education and social care modules from National Pupil Database included in the Education and Child Health Insights from Linked Data (ECHILD) Database NPD, National Pupil Database; PRU, pupil referral unit; SEN, special educational needs; FSM, free school meals; GCSE, General Certificate of Secondary Education (national examinations taken by students at the end of compulsory education); KS, Key Stage. The School Census Pupil Level module is collected on a termly basis in October (Autumn census), January (Spring census) and May (Summer census). The other education census modules are collected in January only. Overview of education and social care modules from National Pupil Database included in the Education and Child Health Insights from Linked Data (ECHILD) Database NPD, National Pupil Database; PRU, pupil referral unit; SEN, special educational needs; FSM, free school meals; GCSE, General Certificate of Secondary Education (national examinations taken by students at the end of compulsory education); KS, Key Stage. The School Census Pupil Level module is collected on a termly basis in October (Autumn census), January (Spring census) and May (Summer census). The other education census modules are collected in January only. The NPD has two social care modules which are both included in the ECHILD Database. The Children in Need (CIN) census collects information related to children referred to social care services and those identified as needing additional help from those services to support their health or development.12 The CIN census includes child characteristics (e.g. age, ethnicity, gender), as well as details of social care referrals, reviews, assessments and use of child protection plans (for children assessed to be at risk of serious harm). The Children Looked After Return (CLA) includes information related to children in care, who are referred to as looked-after children in the UK.13 The CLA contains information related to child characteristics, placements in out-of-home care and adoptions. HES and NPD include a pseudonymized identifier that allows records relating to the same individual to be linked across modules and over time (HESID15 and anonymized Pupil Matching Reference (aPMR),16 respectively). As there is no common pseudonymized identifier in HES and NPD, the ECHILD Database was created by NHS Digital by linking records based on identifiable information (specifically, name, date of birth, sex and chronology of postcode). According to N Libuy, PhD (written communication, February 2021), initial assessments of linkage quality in the ECHILD Database indicate very high linkage rates between HES and NPD records, with linkage rates improving from 94% for children born in 1996/97 to 98% linkage for children born in 2004/05. Full details of the linkage process to create the ECHILD Database have previously been published.17 Briefly, the DfE extracted identifiers and associated aPMRs from NPD to separate them from attribute information about individuals’ education and social care records. This information was securely transferred to NHS Digital. Similarly, at NHS Digital, identifiers and associated HESIDs were extracted from HES, separating them from attribute information about individuals’ health and use of services. Deterministic linking algorithms were used by NHS Digital to HESIDs and aPMRs and create a pseudonymized with of quality no identifiable NPD and HES attribute data and were transferred to a research the ONS Research Service and collated to create the ECHILD Database. The ECHILD Database is it does not include any information that could be used to directly identify a person, such as names, addresses, postcodes or dates of birth. The pseudonymized identifiers it contains and be linked to identifiers NHS or National by including the ECHILD project The ECHILD project is using the ECHILD Database for large-scale, longitudinal research that explores inter-relationships across the domains of health, education and social care in childhood and adolescence. For example, we are the between age at birth, chronic health school attainment and special educational needs in research using linked administrative data in has a between age at birth and risk of The creation of the ECHILD Database it is to explore whether there is a for children in England and this is related to chronic health conditions. These will be for and for example, for for support in based on birth characteristics of the The ECHILD project is also using the ECHILD Database to explore the impact of disruptions to health and education services during the COVID-19 pandemic on hospital attendances for children and young people in England. In it on whether children with additional needs (e.g. with a chronic health in care or were more by disruptions than their full of from the ECHILD project is available Health and education are for children and young For example, children with chronic health have rates of school and school than their these have for between providers in these HES and NPD are well-established administrative datasets for health and education in England. These datasets as an to they are used to national by and for research by the academic However, the of a common identifier in these administrative datasets has limited the for across of the ECHILD is that by linking data across these it a and to explore children’s health their education, and their education their further of the ECHILD Database is that it brings together information from national administrative These datasets include longitudinal, individual-level information for a cohort of children and young The sample million and follow-up period (up to 25 in the ECHILD Database will enable research into outcomes and The datasets are also well by data and the research This that details about information in the datasets is variables they and has over for example, are available to The key of the ECHILD Database is that the use of the data is by being and only a research the ONS In the ONS there is monitoring of data and use and of including any or using the ONS have to training in procedures and data that any to individuals. could to data for their being The of the ECHILD Database is that administrative datasets are not collected for research This may have for the type of research that can be and are For example, HES data are used for (i.e. care providers are from NHS England the by and there may be differences in the quality and of the information that is recorded based on the impact it has on further is that the range of information collected in HES and NPD varies over and years of data and linkage are considered to be of However, both datasets are to data quality at the of to DfE or NHS Digital and are considered of high quality to national are also related to data in HES for in the HES Outpatient module, is not recorded for of These are well it is that researchers using the ECHILD Database with the datasets to the and of their The ECHILD Database will be available to accredited researchers in 2021 by applying to the data providers and NHS Digital). about the ECHILD Database, including an and data is available To discuss opportunities for with the ECHILD project please [ich.echild@ucl.ac.uk]. This is by ADR UK (Administrative Data Research UK), an Economic and Social Research Council (part of UK Research and Innovation) This research was also in part by the Great Ormond Street Hospital Research and Health Data Research UK funded by the UK Medical Research Council and other This research from and to the Children and Research was not commissioned by the National Institute for Health Research Research and are in part by the National Institute for Health Research Children and Research The are those of the and not those of the or the Department of Health and Social is by a funded by the Medical Research Council is funded by and is funded by the Medical Research Council the the with from all the The ECHILD project is in partnership with NHS Digital and the Department for Education and we the individuals for their to the and (DfE). are also to the Office for National Statistics (ONS) for the research for the ECHILD Database. The ECHILD Database data from the NHS Digital and The NHS Digital and ONS do not for any or by the to create the ECHILD Database were granted by the data the DfE and NHS Digital The ECHILD project is in with London School of and the Institute for to and for their on this all the young parents and who to the ECHILD project, as well as who led this also all children and data are used in this