Children and Families Policy Research Unit

University College London (UCL) requires access to NHS England data for the purpose of the following research programme: Children and Families Policy Research

UCL’s Children and Families Policy Research Unit (CPRU) conducts a programme of research on children and families funded by National Institute for Health and Care Research (NIHR) programme grants. The programme has been proposed, assessed, and approved by the NIHR (which includes external peer review) and the (DHSC) Department of Health and Social Care. The programme grants are funded for timely delivery of policy and clinical needs – benefiting from the data resource.

The research objectives listed below are decided and agreed with DHSC and Biomedical Research Centre (BRC) theme leads or deputy leads for the overall programme of research. A small oversight group, with representatives from the NIHR programmes, assesses that each processing activity adheres to the objectives a) to e). Approximately 5-10 research projects will use the data each year.

The NHSE Datasets covered under this Data Sharing Agreement (DSA) are used to achieve the objectives described below in support of the overall research programme.

The objectives of the research are:

a) To determine variation in the use of secondary care services by children and young people over time and their transition to adult services. UCL will analyse variation by patient characteristics (e.g. age, gender, General Practice (GP) registration), and by area/unit level area characteristics such as Trust, practice characteristics such as Quality Outcomes Framework (QOF) scores, and area indicators for deprivation.

b) To determine risk factors for emergency use of secondary care and risk factors for recurrent use (e.g. according to individual patient characteristics such as age, chronic and mental health conditions, deprivation, sex), past use (e.g. frequency and type of past contacts such as Accident & Emergency (A&E), community health services, or admissions). UCL will also examine NHS Trust and area or place-based factors associated with secondary care use. Where possible, UCL will use birth cohort analyses, based on postnatal admissions of children linked to maternity to maternal risk factors (e.g. maternal age and mental health problems, engagement with community health services, or sibling chronic health problems) and birth factors (e.g. birth weight, prolonged stay in neonatal intensive care), to investigate associations with risk of emergency use of secondary care and other outcomes, including mortality. These analyses require the linkage to birth notification and birth registration data to ensure a complete recording of key risk factors including birth weight and gestational age.

c) To conduct prognostic analyses for children and young people for subsequent long-term adverse outcomes into adulthood based on diagnosis and procedure codes to identify risk factors for emergency hospital care and for subsequent long-term adverse outcomes into adulthood (e.g. further emergency admissions or death and continue to follow the individuals until their 56th birthday).

d) To assess the degree of misclassification of outcome (alive/dead) due to linkage errors between mortality and HES datasets. It is crucial that UCL get the age at death on the mortality records in order to do this. Full dates of death are required to be able to estimate the age of death in days for the work on infant mortality (for instance, to be able to distinguish between the first week from later neonatal deaths and from postneonatal deaths), as well as for the work on cause-specific mortality where UCL classify deaths based on admissions within a certain number of days from death.

e) To estimate the risk of confirmed COVID-19 infection in children according to factors including age, gender, shielding status (of the children and young people), prematurity and ethnic group. UCL will also examine the impact of physical distancing measures and school closures on the epidemiology of other respiratory infections. This requires linkage to NHS England SGSS data and COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) data on COVID-19 test results as well as test results. UCL are requesting dates of sample collection, date of the test, virus tested for, and test results for all children and young people aged <25 years old to be linked to the other requested datasets for the period January 2020 to the latest data available. For the SGSS and Pillar 2 datasets, UCL requests data for women up to age 55 to help identify COVID-19 infections in mothers under the age of 56. This will be used to assess the effects of COVID infection during pregnancy and after childbirth on children’s long-term health.

UCL will use ICD-10 codes from previous hospital contacts within HES to identify children and young people who are likely to be on the shielding list. As such, potential identification will be determined by a set of criteria determined by UCL. As some of the research objectives centre around children with long-term conditions, UCL will use shielding status* to identify those within that group at increased risk of COVID-19 infection

*This relates only to children/young people; not the mother or family members, UCL will use ICD-10 codes from previous hospital episodes to identify children/young people who were considered likely to be on the shielding list (i.e. identifying children/young people with long-term conditions likely to put them at increased risk of COVID-19 infection). ‘Shielding status’ is assumed based on specific criteria rather than verified in any data supplied by NHS England.

The following NHS England data will be accessed:

• COVID-19 Second Generation Surveillance System (SGSS)

• COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2)

UCL require results from COVID-19 tests from the COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) (covering the NHS test, trace isolate programme and performed by commercial partners) and results from tests for COVID-19 and other respiratory viral infections from the SGSS datasets. This will allow UCL to examine risk factors for confirmed COVID-19 infection in children according to key risk factors including ethnic group, age, clinical risk group and sex. These datasets will be used to achieve objective e) only.

• Mental Health and Learning Disabilities Data Set (MHLDDS)

• Mental Health Minimum Data Set (MHMDS)

• Mental Health Services Data Set (MHSDS)

Mental Health data will allow UCL to assess mental health conditions as risk factors in more detail (objective b) and outcomes (objective c), during childhood and young adulthood. In current analyses, UCL has included mental health conditions as part of the chronic conditions for objectives b) and c). Linkage to the mental health datasets will add information on the use of mental health services outside hospitals, where the majority of care for mental health conditions happens.

• Community Services Data Set (CSDS)

UCL require the community services dataset (CSDS) to assess a wider range of risk factors for adverse outcomes in children, as defined under objective c). The CSDS will allow UCL to add important information such as vaccination uptake and health visiting.

• Birth Notification Data

• Civil Registration – Births

• Maternity Services Data Set (MSDS) v1.5 and v2

These data are more complete compared to UCL’s birth cohorts in HES as outlined under objective b). As shown in research UCL published using just HES data alone, 1 in 3 hospitals have poor recording of delivery data, including variables that are vital risk factors for epidemiological studies such as gestational age and birth weight. MSDS data allows UCL to assess the effects of risk factors such as maternal smoking and contact with antenatal services.

• Hospital Episode Statistics Accident and Emergency (HES A and E)

• Hospital Episode Statistics Admitted Patient Care (HES APC)

• Hospital Episode Statistics Critical Care (HES Critical Care)

• Hospital Episode Statistics Outpatients (HES OP)

• Emergency Care Data Set (ECDS)

HES and ECDS data for all persons (male and female) under the age of 56 is necessary to assess long-term adverse outcomes of children and young people into adulthood (objective c). This includes providing context for the admission rates for children and young people – for instance, by comparing children and young people with adults UCL can show how sharp object assault-related injuries are much higher in children and young people. Additionally, UCL require data for all women under the age of 56 to identify mothers (through an algorithm combining information from diagnoses and procedure codes, as well as variables included in the maternity tail) as there is direct method to identify women who are mothers in HES data.

• Civil Registrations of Death - Secondary Care Cut

UCL need information on hospital service use and mortality for both men and women to assess long-term outcomes (including mortality).

The level of data will be pseudonymised.

The data will be minimised as follows.

• HES APC, HES CC, HES OP, ECDS, CSDS, MSDS, MHSDS, Birth notification data and Civil Registration Births are limited to individuals under the age of 56

• Civil Registration Deaths Secondary Care Cut- Limited to deaths records registered in England between 1st January 1998 until as late as possible for all those who died aged 0-55

• SGSS and Pillar 2- Records will be limited to children and young people (of both sex) under the age of 25, and to mothers aged 25-55 years who gave birth on or after 1st January 2015.

UCL is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

It is in the public interest because the research influences Department of Health policymakers, service providers, healthcare professionals and the general public. This directly benefits the health of children and the healthcare provided to children in the here and now and this is key to reducing the future burdens on the NHS.

The Children and Families Policy Research Unit (CPRU), within University College London (UCL) is one of 15 National Institute for Health and Care Research (NIHR) Policy Research Units formed to undertake research to inform decision-making by government and arms-length bodies.

CPRU works closely with the Department of Health and Social Care (DHSC) to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and historically, Public Health England (now the Office for Health Improvement and Disparities at DHSC).

In addition, UCL works with the NIHR Great Ormond Street Hospital Biomedical Research Centre (GOSH BRC) which brings together UCL academics with NHS clinical expertise. The GOSH BRC focuses on paediatric research using data-derived evidence at scale to inform clinical practice in relation to specialist paediatric services and child health.

Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure back-up of data stored in UCL’s Data Safe Haven.

UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.

All those involved in the processing of the data are substantive employees of UCL or students on UCL MSc and doctorate courses under the supervision of UCL substantive employees. The work undertaken by the students is only for the purpose stated in this Purpose section.

UCL aim to achieve public and patient involvement for every project and provides details of these activities on UCL’s CPRU website.

UCL discussed the research objectives with parents of children with learning disabilities and complex needs from the Great Ormond Street Hospital Biomedical Research Centre Parents and Carers’ Group (PCAG) in Nov 2019. PCAG have advised UCL to focus on the transition from paediatric to adult care, as this is a time when coordination of care often breaks down. Following these discussions, UCL revised their research questions and carried out a study looking at changes in hospital admission rates during the transition. UCL shared their findings with the group in Dec 2020 (online) and one parent joined the team as a research advisor (and is a co-author on the paper).

UCL also held a meeting with the National Children’s Bureau Young Research Advisors (YRAs) in February 2022 on how GP services can meet the needs of all children and young people.

Additionally, UCL Public Engagement provided a grant for a listening exercise in July 2021 on how to make research studies more accessible and culturally relevant to Black people with mental health issues who are also survivors of violence and abuse.

Through UCL's Children and Families Policy Research Unit (CPRU) there will be regular engagement with the Department of Health and Social Care (DHSC) about the CPRU projects during development and outputs, and DHSC will review outputs to give feedback. All analyses undertaken as part of this programme of research for the policy research unit aim to provide evidence to inform healthcare professionals, service providers, policymakers, and service users about children’s health and how services meet their needs.

The mechanisms for engagement and dissemination with NHS systems and the public are as follows:

a) UCL has well-established mechanisms for the patient and public involvement. This is facilitated by the various groups specialising in public engagement including the GOSH young persons advisory group and parent and carers group

b) The GOSH BRC will enable engagement with specialist clinical services and patients and their families.

c) Researchers using the data at the Great Ormond Street Institute of Child Health contribute to practice through the NIHR ARCs (Applied Research Collaborations) in North Thames and the national cross-cutting theme on Child Health and Maternity.

The expected outputs of the processing will be:

• Presentation to services providers through meetings with the RCPCH (Royal College of Paediatricians and Child Health), the North London Collaborations for Leadership in Applied Research and Care (CLAHRC), and the Academic Health Sciences Network (AHSN)

• Present findings and updates to the parliamentary Office of Science and Technology

• Present findings to clinicians at clinical practice meetings

The above will be presented to (but not limited to) the Royal College of Paediatrics and Child Health in April/May 2023-24. This engagement is occurring with the direct goal of changing practice in the healthcare field. The findings will also be published in peer-reviewed journals such as the Lancet, Archives of Disease in Childhood, PLoS Medicine, BMJ Open, Clinical Infectious Diseases and Eurosurveillance

• Inform DHSC policymakers, service providers and practitioners about patient and service factors associated with emergency use of secondary care and long-term adverse outcomes through the child's life course and into adulthood

• Engagement with DHSC policymakers, practitioners and the public during the research, to refine questions and applications of findings, and during the dissemination phase. In this way, UCL will ensure that the study is relevant to NHS systems and UCL will endeavour to feedback results to the NHS.

The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Journals (such as Lancet Regional Health, Archives of Disease in Childhood, British Journal of Psychiatry Open)

• Workshops involving academics and industry analysts (UCL run an ‘introduction to Hospital Episode Statistics’ course where we use some CPRU research as examples of how HES data can be used for academic research)

• Webinars open to other academics, children and young people and the public (e.g. the Catherine Peckham symposium on ‘the power of data for child and family mental health research’ UCL organised on 2 November 2022)

• Social media (via @UCL_CPRU and @UCL_PPP)

• Public reports (such as UCL’s report on how we can use the community services dataset (CSDS) for research into health visiting, published on the CPRU website).

• Direct bilateral engagement with the Department of Health and Social Care (UCL have a monthly catch-up on data-based evidence and ongoing research projects with DHSC analysts, and a secondment scheme where DHSC analysts work in CPRU one day a week and a UCL scientist works in DHSC one day a week)

• Briefing documents provided to Parliamentary committees and DHSC civil servants

• Open source frameworks such as validated code lists and data cleaning scripts (shared on the UCL Child Health Informatics Group GitHub page).

• Public events (e.g. the Catherine Peckham symposium on ‘the power of data for child and family mental health research’ UCL organised on 2 November 2022 – which was a hybrid event)

• Posters displayed at scientific conferences

• Press/media engagement

UCL has utilised data from NHS England to:

• Contribute to the community of wide administrative data used by providing input to the Ben Goldacre Report (Better, broader, safer: using health data for research and analysis, April 2022).

• Publish a paper looking at hospital admissions for stress-related presentations (SRPs) among school-aged adolescents during term time versus holidays in England- analysis showed that SPRs are common among adolescents, affecting around two girls and one boy in every classroom. Higher rates in term time than holidays suggest that school factors may contribute

• Published a paper in Lancet Regional Health Europe on trends in hospital admissions during the transition to adult services for young people with learning disabilities or autism. This work showed decreases in planned admission rates during the transition was paralleled by small but consistent increases in unplanned admissions for these groups of vulnerable young people. The observed decreases in non-surgical planned admissions could reflect disruptions to the continuity of planned or respite care or a shift towards the provision of healthcare in primary care and community settings.

• Inform the chair of the Health and Social Care Select Committee about disparities in infant mortality in England and Sweden in relation to their enquiry into the safety of maternity services

• Shared research with the Conception to Age Two – First 1001 Days All-Party Parliamentary Group - which was formed to promote a holistic approach to the antenatal and postnatal period, specifically with regards to the early years and infant mental health; to hold evidence-based enquiries into best practice for the 1001 critical days to help policymakers make informed decisions on a provision in this period; and to uphold cross-party consensus for this age group.

• Submitted evidence to the Leadsom Review on Early Years Healthy Development. This contribution may directly influence health policy and result in direct benefits for patients.

• Published a public report on how the Community Services Data Set (CSDS) can be used for research into health visiting.

• Publish in the Journal of the American Medical Association (JAMA) Paediatrics, showing a continued increase in adversity-related injury rates (defined as self-inflicted or related to drug/alcohol use or violence) in teenagers in England. The increases may indicate an increasing problem, particularly in females and for intentional self-injury in males aged 15-19 years

• Presented research at several conferences, including work on mortality in vulnerable mothers with opioid use during pregnancy, which found that mothers with opioid use were 11 times more likely to die during the 10 years after childbirth and exploring time to next live birth for vulnerable mothers, finding that women with records indicating vulnerability, such as mental health problems, age <20 years or high parity (defined as the number of pregnancies reaching viable gestational age (including live births and stillbirths), will have a next child faster than the other women.

• Presented work at conferences on cumulative exposure to child maltreatment or neglect for children in their first five years of life as recorded in hospital records.

MAY 2024 Update:

• UCL have prepared a policy briefing on the completeness of the Community Services Health Dataset (CSDS) for understanding health visiting service delivery. Using age-based supplementation methods, it is possible to create a representative sample of local authorities to use for research on health visiting in the CSDS. This research was also presented at a MatCHNet webinar.

• Presented research on the cumulative incidence of chronic health conditions in children with Down Syndrome to the leadership and stakeholders of the Down Syndrome Association.

University College London (UCL) requires access to NHS England data for the purpose of the following research programme: Children and Families Policy Research

UCL’s Children and Families Policy Research Unit (CPRU) conducts a programme of research on children and families funded by National Institute for Health and Care Research (NIHR) programme grants. The programme has been proposed, assessed, and approved by the NIHR (which includes external peer review) and the (DHSC) Department of Health and Social Care. The programme grants are funded for timely delivery of policy and clinical needs – benefiting from the data resource.

The research objectives listed below are decided and agreed with DHSC and Biomedical Research Centre (BRC) theme leads or deputy leads for the overall programme of research. A small oversight group, with representatives from the NIHR programmes, assesses that each processing activity adheres to the objectives a) to e). Approximately 5-10 research projects will use the data each year.

The NHSE Datasets covered under this Data Sharing Agreement (DSA) are used to achieve the objectives described below in support of the overall research programme.

The objectives of the research are:

a) To determine variation in the use of secondary care services by children and young people over time and their transition to adult services. UCL will analyse variation by patient characteristics (e.g. age, gender, General Practice (GP) registration), and by area/unit level area characteristics such as Trust, practice characteristics such as Quality Outcomes Framework (QOF) scores, and area indicators for deprivation.

b) To determine risk factors for emergency use of secondary care and risk factors for recurrent use (e.g. according to individual patient characteristics such as age, chronic and mental health conditions, deprivation, sex), past use (e.g. frequency and type of past contacts such as Accident & Emergency (A&E), community health services, or admissions). UCL will also examine NHS Trust and area or place-based factors associated with secondary care use. Where possible, UCL will use birth cohort analyses, based on postnatal admissions of children linked to maternity to maternal risk factors (e.g. maternal age and mental health problems, engagement with community health services, or sibling chronic health problems) and birth factors (e.g. birth weight, prolonged stay in neonatal intensive care), to investigate associations with risk of emergency use of secondary care and other outcomes, including mortality. These analyses require the linkage to birth notification and birth registration data to ensure a complete recording of key risk factors including birth weight and gestational age.

c) To conduct prognostic analyses for children and young people for subsequent long-term adverse outcomes into adulthood based on diagnosis and procedure codes to identify risk factors for emergency hospital care and for subsequent long-term adverse outcomes into adulthood (e.g. further emergency admissions or death and continue to follow the individuals until their 56th birthday).

d) To assess the degree of misclassification of outcome (alive/dead) due to linkage errors between mortality and HES datasets. It is crucial that UCL get the age at death on the mortality records in order to do this. Full dates of death are required to be able to estimate the age of death in days for the work on infant mortality (for instance, to be able to distinguish between the first week from later neonatal deaths and from postneonatal deaths), as well as for the work on cause-specific mortality where UCL classify deaths based on admissions within a certain number of days from death.

e) To estimate the risk of confirmed COVID-19 infection in children according to factors including age, gender, shielding status (of the children and young people), prematurity and ethnic group. UCL will also examine the impact of physical distancing measures and school closures on the epidemiology of other respiratory infections. This requires linkage to NHS England SGSS data and COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) data on COVID-19 test results as well as test results. UCL are requesting dates of sample collection, date of the test, virus tested for, and test results for all children and young people aged <25 years old to be linked to the other requested datasets for the period January 2020 to the latest data available. For the SGSS and Pillar 2 datasets, UCL requests data for women up to age 55 to help identify COVID-19 infections in mothers under the age of 56. This will be used to assess the effects of COVID infection during pregnancy and after childbirth on children’s long-term health.

UCL will use ICD-10 codes from previous hospital contacts within HES to identify children and young people who are likely to be on the shielding list. As such, potential identification will be determined by a set of criteria determined by UCL. As some of the research objectives centre around children with long-term conditions, UCL will use shielding status* to identify those within that group at increased risk of COVID-19 infection

*This relates only to children/young people; not the mother or family members, UCL will use ICD-10 codes from previous hospital episodes to identify children/young people who were considered likely to be on the shielding list (i.e. identifying children/young people with long-term conditions likely to put them at increased risk of COVID-19 infection). ‘Shielding status’ is assumed based on specific criteria rather than verified in any data supplied by NHS England.

The following NHS England data will be accessed:

• COVID-19 Second Generation Surveillance System (SGSS)

• COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2)

UCL require results from COVID-19 tests from the COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) (covering the NHS test, trace isolate programme and performed by commercial partners) and results from tests for COVID-19 and other respiratory viral infections from the SGSS datasets. This will allow UCL to examine risk factors for confirmed COVID-19 infection in children according to key risk factors including ethnic group, age, clinical risk group and sex. These datasets will be used to achieve objective e) only.

• Mental Health and Learning Disabilities Data Set (MHLDDS)

• Mental Health Minimum Data Set (MHMDS)

• Mental Health Services Data Set (MHSDS)

Mental Health data will allow UCL to assess mental health conditions as risk factors in more detail (objective b) and outcomes (objective c), during childhood and young adulthood. In current analyses, UCL has included mental health conditions as part of the chronic conditions for objectives b) and c). Linkage to the mental health datasets will add information on the use of mental health services outside hospitals, where the majority of care for mental health conditions happens.

• Community Services Data Set (CSDS)

UCL require the community services dataset (CSDS) to assess a wider range of risk factors for adverse outcomes in children, as defined under objective c). The CSDS will allow UCL to add important information such as vaccination uptake and health visiting.

• Birth Notification Data

• Civil Registration – Births

• Maternity Services Data Set (MSDS) v1.5 and v2

These data are more complete compared to UCL’s birth cohorts in HES as outlined under objective b). As shown in research UCL published using just HES data alone, 1 in 3 hospitals have poor recording of delivery data, including variables that are vital risk factors for epidemiological studies such as gestational age and birth weight. MSDS data allows UCL to assess the effects of risk factors such as maternal smoking and contact with antenatal services.

• Hospital Episode Statistics Accident and Emergency (HES A and E)

• Hospital Episode Statistics Admitted Patient Care (HES APC)

• Hospital Episode Statistics Critical Care (HES Critical Care)

• Hospital Episode Statistics Outpatients (HES OP)

• Emergency Care Data Set (ECDS)

HES and ECDS data for all persons (male and female) under the age of 56 is necessary to assess long-term adverse outcomes of children and young people into adulthood (objective c). This includes providing context for the admission rates for children and young people – for instance, by comparing children and young people with adults UCL can show how sharp object assault-related injuries are much higher in children and young people. Additionally, UCL require data for all women under the age of 56 to identify mothers (through an algorithm combining information from diagnoses and procedure codes, as well as variables included in the maternity tail) as there is direct method to identify women who are mothers in HES data.

• Civil Registrations of Death - Secondary Care Cut

UCL need information on hospital service use and mortality for both men and women to assess long-term outcomes (including mortality).

The level of data will be pseudonymised.

The data will be minimised as follows.

• HES APC, HES CC, HES OP, ECDS, CSDS, MSDS, MHSDS, Birth notification data and Civil Registration Births are limited to individuals under the age of 56

• Civil Registration Deaths Secondary Care Cut- Limited to deaths records registered in England between 1st January 1998 until as late as possible for all those who died aged 0-55

• SGSS and Pillar 2- Records will be limited to children and young people (of both sex) under the age of 25, and to mothers aged 25-55 years who gave birth on or after 1st January 2015.

UCL is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

It is in the public interest because the research influences Department of Health policymakers, service providers, healthcare professionals and the general public. This directly benefits the health of children and the healthcare provided to children in the here and now and this is key to reducing the future burdens on the NHS.

The Children and Families Policy Research Unit (CPRU), within University College London (UCL) is one of 15 National Institute for Health and Care Research (NIHR) Policy Research Units formed to undertake research to inform decision-making by government and arms-length bodies.

CPRU works closely with the Department of Health and Social Care (DHSC) to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and historically, Public Health England (now the Office for Health Improvement and Disparities at DHSC).

In addition, UCL works with the NIHR Great Ormond Street Hospital Biomedical Research Centre (GOSH BRC) which brings together UCL academics with NHS clinical expertise. The GOSH BRC focuses on paediatric research using data-derived evidence at scale to inform clinical practice in relation to specialist paediatric services and child health.

Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure back-up of data stored in UCL’s Data Safe Haven.

UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.

All those involved in the processing of the data are substantive employees of UCL or students on UCL MSc and doctorate courses under the supervision of UCL substantive employees. The work undertaken by the students is only for the purpose stated in this Purpose section.

UCL aim to achieve public and patient involvement for every project and provides details of these activities on UCL’s CPRU website.

UCL discussed the research objectives with parents of children with learning disabilities and complex needs from the Great Ormond Street Hospital Biomedical Research Centre Parents and Carers’ Group (PCAG) in Nov 2019. PCAG have advised UCL to focus on the transition from paediatric to adult care, as this is a time when coordination of care often breaks down. Following these discussions, UCL revised their research questions and carried out a study looking at changes in hospital admission rates during the transition. UCL shared their findings with the group in Dec 2020 (online) and one parent joined the team as a research advisor (and is a co-author on the paper).

UCL also held a meeting with the National Children’s Bureau Young Research Advisors (YRAs) in February 2022 on how GP services can meet the needs of all children and young people.

Additionally, UCL Public Engagement provided a grant for a listening exercise in July 2021 on how to make research studies more accessible and culturally relevant to Black people with mental health issues who are also survivors of violence and abuse.

Through UCL's Children and Families Policy Research Unit (CPRU) there will be regular engagement with the Department of Health and Social Care (DHSC) about the CPRU projects during development and outputs, and DHSC will review outputs to give feedback. All analyses undertaken as part of this programme of research for the policy research unit aim to provide evidence to inform healthcare professionals, service providers, policymakers, and service users about children’s health and how services meet their needs.

The mechanisms for engagement and dissemination with NHS systems and the public are as follows:

a) UCL has well-established mechanisms for the patient and public involvement. This is facilitated by the various groups specialising in public engagement including the GOSH young persons advisory group and parent and carers group

b) The GOSH BRC will enable engagement with specialist clinical services and patients and their families.

c) Researchers using the data at the Great Ormond Street Institute of Child Health contribute to practice through the NIHR ARCs (Applied Research Collaborations) in North Thames and the national cross-cutting theme on Child Health and Maternity.

The expected outputs of the processing will be:

• Presentation to services providers through meetings with the RCPCH (Royal College of Paediatricians and Child Health), the North London Collaborations for Leadership in Applied Research and Care (CLAHRC), and the Academic Health Sciences Network (AHSN)

• Present findings and updates to the parliamentary Office of Science and Technology

• Present findings to clinicians at clinical practice meetings

The above will be presented to (but not limited to) the Royal College of Paediatrics and Child Health in April/May 2023-24. This engagement is occurring with the direct goal of changing practice in the healthcare field. The findings will also be published in peer-reviewed journals such as the Lancet, Archives of Disease in Childhood, PLoS Medicine, BMJ Open, Clinical Infectious Diseases and Eurosurveillance

• Inform DHSC policymakers, service providers and practitioners about patient and service factors associated with emergency use of secondary care and long-term adverse outcomes through the child's life course and into adulthood

• Engagement with DHSC policymakers, practitioners and the public during the research, to refine questions and applications of findings, and during the dissemination phase. In this way, UCL will ensure that the study is relevant to NHS systems and UCL will endeavour to feedback results to the NHS.

The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Journals (such as Lancet Regional Health, Archives of Disease in Childhood, British Journal of Psychiatry Open)

• Workshops involving academics and industry analysts (UCL run an ‘introduction to Hospital Episode Statistics’ course where we use some CPRU research as examples of how HES data can be used for academic research)

• Webinars open to other academics, children and young people and the public (e.g. the Catherine Peckham symposium on ‘the power of data for child and family mental health research’ UCL organised on 2 November 2022)

• Social media (via @UCL_CPRU and @UCL_PPP)

• Public reports (such as UCL’s report on how we can use the community services dataset (CSDS) for research into health visiting, published on the CPRU website).

• Direct bilateral engagement with the Department of Health and Social Care (UCL have a monthly catch-up on data-based evidence and ongoing research projects with DHSC analysts, and a secondment scheme where DHSC analysts work in CPRU one day a week and a UCL scientist works in DHSC one day a week)

• Briefing documents provided to Parliamentary committees and DHSC civil servants

• Open source frameworks such as validated code lists and data cleaning scripts (shared on the UCL Child Health Informatics Group GitHub page).

• Public events (e.g. the Catherine Peckham symposium on ‘the power of data for child and family mental health research’ UCL organised on 2 November 2022 – which was a hybrid event)

• Posters displayed at scientific conferences

• Press/media engagement

UCL has utilised data from NHS England to…

• Contribute to the community of wide administrative data used by providing input to the Ben Goldacre Report (Better, broader, safer: using health data for research and analysis, April 2022).

• Publish a paper looking at hospital admissions for stress-related presentations (SRPs) among school-aged adolescents during term time versus holidays in England- analysis showed that SPRs are common among adolescents, affecting around two girls and one boy in every classroom. Higher rates in term time than holidays suggest that school factors may contribute

• Published a paper in Lancet Regional Health Europe on trends in hospital admissions during the transition to adult services for young people with learning disabilities or autism. This work showed decreases in planned admission rates during the transition was paralleled by small but consistent increases in unplanned admissions for these groups of vulnerable young people. The observed decreases in non-surgical planned admissions could reflect disruptions to the continuity of planned or respite care or a shift towards the provision of healthcare in primary care and community settings.

• Inform the chair of the Health and Social Care Select Committee about disparities in infant mortality in England and Sweden in relation to their enquiry into the safety of maternity services

• Shared research with the Conception to Age Two – First 1001 Days All-Party Parliamentary Group - which was formed to promote a holistic approach to the antenatal and postnatal period, specifically with regards to the early years and infant mental health; to hold evidence-based enquiries into best practice for the 1001 critical days to help policymakers make informed decisions on a provision in this period; and to uphold cross-party consensus for this age group.

• Submitted evidence to the Leadsom Review on Early Years Healthy Development. This contribution may directly influence health policy and result in direct benefits for patients.

• Published a public report on how the Community Services Data Set (CSDS) can be used for research into health visiting.

• Publish in the Journal of the American Medical Association (JAMA) Paediatrics, showing a continued increase in adversity-related injury rates (defined as self-inflicted or related to drug/alcohol use or violence) in teenagers in England. The increases may indicate an increasing problem, particularly in females and for intentional self-injury in males aged 15-19 years

• Presented research at several conferences, including work on mortality in vulnerable mothers with opioid use during pregnancy, which found that mothers with opioid use were 11 times more likely to die during the 10 years after childbirth and exploring time to next live birth for vulnerable mothers, finding that women with records indicating vulnerability, such as mental health problems, age <20 years or high parity (defined as the number of pregnancies reaching viable gestational age (including live births and stillbirths), will have a next child faster than the other women.

• Presented work at conferences on cumulative exposure to child maltreatment or neglect for children in their first five years of life as recorded in hospital records.

The data is requested for a programme of research relevant to the aims of the of the National Institute of Health Research Children and Families Policy Research Unit (CPRU), within University College London (UCL).

CPRU is one of 15 NIHR Policy Research Units formed to undertake research to inform decision-making by government and arms-length bodies. CPRU works closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England.

The legal basis for processing personal data for this purpose data at UCL falls under Article 6(1)(e) of the General Data Protection Regulations (GDPR), i.e. “a task carried out in the public interest”. It also falls under Article 9(2)(j), “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.

It is in the public interest because the research influences Department of Health policy makers, service providers, healthcare professionals and the general public. This directly benefits the health of children and the healthcare provided to children in the here and now and this is key to reducing future burden on the NHS.

For this programme of research, UCL are the sole Data Controller who also process data.

The objectives of the research are:

a) To determine variation in use of secondary care services by children and young people over time and their transition to adult services. UCL will analyse variation by patient characteristics (e.g. age, gender, General Practice (GP) registration), and by area/unit level area characteristics such as trust, practice characteristics such as Quality Outcomes Framework (QOF) scores, and area indicators for deprivation.

b) To determine risk factors for emergency use of secondary care and risk factors for recurrent use (e.g. according to individual patient characteristics such as age, chronic and mental health conditions, deprivation, sex), past use (e.g. frequency and type of past contact such as Accident & Emergency (A&E), community health services, or admissions). UCL will also examine NHS trust and area factors associated with secondary care use. Where possible, UCL will use birth cohort analyses, based on postnatal admissions of children linked to maternity to maternal risk factors (e.g. maternal age and mental health problems, engagement with community health services) and birth factors (e.g. birth weight, prolonged stay in neonatal intensive care), to investigate associations with risk of emergency use of secondary care and other outcomes, including mortality. These analyses require the linkage to birth notification an birth registration data to ensure complete recording of key risk factors including birth weight and gestational age (see further detail below).

c) UCL will conduct prognostic analyses for children and young people based on diagnosis and procedure codes to identify risk factors for emergency hospital care and for subsequent long-term adverse outcomes into adulthood (e.g.: further emergency admissions or death).

d) UCL would also like to request all mortality records for deaths registered in England from 1st January 1998 until as late as possible, for all persons who died aged 0-55; in other words, both records that link to Hospital Episode Statistics (HES) as well as those that do not link to HES. UCL need all deaths in order to assess the degree of misclassification of outcome (alive/dead) due to linkage errors between mortality and HES datasets. It is crucial that UCL get the age at death on the mortality records in order to do this. Full dates of death is required to be able to estimate age of death in days for the work on infant mortality (for instance, to be able to distinguish between first week from later neonatal deaths and from postneonatal deaths), as well as for the work on cause specific mortality where UCL classify deaths based on admissions within a certain number of days from death.

Additionally, having date of death available enables UCL to determine delay in death registration for data validation.

Along with the outcomes for children and young people, UCL wish to examine health of their mothers. UCL are required to fully understand the health outcomes for children and young people and to do this, it is also important to look at the health of the mothers. UCL request data for people up to age 56 years in order to capture the health of all mothers before and after the time of giving birth. Up to age 56 has been chosen as it is believed the most likely upper age limit for a mother giving birth will be around aged 50 and this will allow 5 years follow up. It is not possible to minimise the data to women only due to technical capabilities and the potential for confusion within the data.

UCL also access the Community Services Dataset, Maternity Services Dataset, Mental Health Services Dataset (and predecessors), civil registrations (birth registrations), birth notifications, COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) and Public Health England Second Generation Surveillance System (SGSS) data to build upon the existing work and aims of the research project.

These additional datasets are being requested to build on UCLs existing programme of work. The objectives of the work of CPRU UCL will remain the same, but the additional datasets will allow UCL to explore healthcare service use in more detail, including healthcare that occurs in the community, antenatal service use and engagement with mental health services. Additionally, this will allow for broader and more inclusive definitions of long-term conditions and vulnerability in children and young people.

Additionally, as a response to the COVID19 crisis, UCL have added an objective to examine the risk of confirmed COVID19 infection according to demographic, clinical and ethnic risk groups in children.

This additional objective is as follows:

UCL will estimate the risk of confirmed COVID19 infection in children according to factors including age, gender, shielding status (of the children and young people), prematurity and ethnic group. UCL will also examine the impact of physical distancing measures and school closures on the epidemiology of other respiratory infections (as available in SGSS). This requires linkage to Public Health England SGSS data and COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) data on COVID19 test results as well as test results. UCL are requesting dates of sample collection, date of test, virus tested for, and test results for all children and young people aged <25 years old to be linked to the other requested datasets for the period January 2020 to the latest date available.

UCL will use ICD-10 codes from previous hospital contacts within HES to identify children and young people who are likely to be on the shielding list. As some of the research objectives centre around children with long-term conditions, UCL will use shielding status to identify those within that group at increased risk of covid-19 infection

The maternity services dataset and birth registration and notifications data will allow UCL to use data that are more complete in compared to UCL’s existing birth cohort studies as outlined under objective b. As shown in research UCL published using just HES data alone, 1 in 3 hospitals have poor recording of delivery data, including variables that are vital risk factors for epidemiological studies such as gestational age and birth weight.

The mental health services dataset (MHSD) will allow UCL to assess mental health conditions in children more comprehensively. In current analyses, UCL have included mental health conditions as part of the chronic conditions for objectives b and c. However, the majority of care for children with mental health conditions happens outside of hospital, meaning it is only possible to pick up the most severe case using only HES inpatient diagnostic codes.

UCL request the community services dataset (CSDS) to assess a wider range of risk factors for adverse outcomes in children, as defined under objective c. The CSDS will allow UCL to add important information such as vaccination uptake and health visiting.

UCL request results from COVID19 tests from the COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) (covering the NHS test, trace isolate programme and performed by commercial partners) and results from tests for COVID19 and other respiratory viral infections from the SGSS datasets. This will allow UCL to examine risk factors for confirmed COVID19 infection in children according to key risk factors including ethnic group, age, clinical risk group and sex.

Through UCL's Children and Families Policy Research Unit (CPRU) there will be regular engagement with the Department of Health and Social Care (DHSC) about the CPRU projects during development and outputs, and DoH will review outputs to give feedback. All analyses undertaken as part of this programme of research for the policy research unit aim to provide evidence to inform health care professionals, service providers, policy makers, and service users about children’s health and how services meet their needs.

Other outputs include presentations to service providers through meetings with the RCPCH (Royal College of Paediatricians and Child Health), the North London Collaborations for Leadership in Applied Research and Care (CLAHRC), and through the Academic Health Sciences Network (AHSN). Updates will also be provided to the Parliamentary Office of Science and Technology. The findings will also be presented to clinicians at clinical practice meetings including but not limited to the Royal College of Paediatrics and Child Health in April/May 2021-2022. This engagement is occurring with the direct goal of changing practice in the health care field.

The findings will also be published in peer reviewed journals (for details see end of section 5c) and policy briefings for the DHSC. The projects in this application are expected to finish by early 2023.

Specifically, the research will inform DHSC policy makers, service providers and practitioners about patient and service factors associated with emergency use of secondary care and long-term adverse outcomes through the child life course and into adulthood. The research programme will engage with DHSC policy makers, practitioners and public during the research, to refine questions and applications of findings, and during the dissemination phase. In this way, UCL will ensure that the study is relevant to NHS systems and UCL will endeavour to feedback results to the NHS.

The mechanisms for engagement and dissemination with NHS systems and the public are as follows:

a) UCL has well-established mechanisms for patient and public involvement. This is facilitated by the National Children’s Bureau (NCB) Research Centre and other networks.

b) The study is conducted as part of a programme of research for the Children and Families Policy Research Unit (CPRU), funded by the Department of Health Policy Research Programme. CPRU aims to improve the health of children, young people and families by undertaking research to provide evidence for health policy and practice. The CPRU program requires regular engagement with policy makers at the Department of Health.

c) The project team at the Great Ormond Street Institute of Child Health contribute to the Academic Health Science Network at UCL Partners AHSN theme on Integrated children and young people’s programme, which aims to implement research findings into practice. Engagement is also through the CLAHRC, hosted by UCL Partners.

The papers resulting from these studies will be published in peer-reviewed journals (such as the Lancet, Archives of Disease in Childhood, PLoS Medicine, BMJ Open, Clinical Infectious Diseases and Eurosurveillance) and presented at scientific conferences (such as the, International Population Data Linkage Conference, International Society for the Prevention of Child Abuse and Neglect, Royal College of Paediatrics and Child Health annual conference, European Society for Paediatric Infectious Diseases Annual Scientific Meeting, and Informatics for Health conference). UCL aim to present the work at scientific conferences and use feedback provided at these meetings to write up papers to be submitted for publication between 2020 - 2023.

All outputs will be in aggregate form only with small numbers suppressed in line with the HES analysis guide.

UCL have discussed the research objectives with parents of children with learning disability and complex needs from the Great Ormond Street Hospital Biomedical Research Centre Parents and Carers’ Group (PCAG) in Nov 2019. PCAG have advised UCL to focus on the transition from paediatric to adult care, as this is a time when co-ordination of care often breaks down. Following these discussions, UCL have revised their research questions and carried out a study looking at changes in hospital admission rates during transition. UCL shared their findings with the group in Dec 2020 (online) and one parent joined the team as a research advisor (and will be co-author on the paper).

In November 2019 UCL discussed using linked administrative health data, such as HES data, for child health research with the parent advisory group of the National Children’s Bureau.

UCL have also done continued work with the National Children’s Bureau Young Research Advisors group. UCL have previously presented some of their research findings to them, and they helped UCL translate their findings into short animated videos, accessible for children and young people.

Benefits from the data already received include:

UCL have used their research to inform the Chair of the Health and Social Care Select Committee about disparities in infant mortality in England and Sweden in relation to their enquiry into the safety of maternity services and have also shared research with the Conception to Age Two – First 1001 Days All-Party Parliamentary Group - which was formed to promote a holistic approach to the antenatal and post-natal period, specifically with regards to the early years and infant mental health; to hold evidence-based enquiries into best practice for the 1001 critical days to help policymakers make informed decisions on provision in this period; and to uphold cross-party consensus for this age group.

Additionally, UCL have submitted evidence to the Leadsom Review on Early Years Healthy Development, as well as the Goldacre Review into the use of health data for research and analysis. These contributions can directly influence health policy and result in direct benefits for patients.

UCL’s research has been published in the Journal of the American Medical Association (JAMA) Pediatrics, showing a continued increase in adversity-related injury rates (defined as self-inflicted or related to drug/alcohol use or violence) in teenagers in England. The increases may indicate an increasing problem, particularly in females and for intentional self-injury in males aged 15-19 years. UCL aim to extend this research to determine how early preventive interventions in community services (schools, family, and primary care) can affect presentations to hospital.

Additionally, UCL have had research on children in paediatric critical care accepted for publication in Archives of Diseases in Childhood, showing that the rate of paediatric admissions with indicators of high dependency care increased at a faster rate in hospitals without a dedicated PICU between 2008 and 2016. This finding raises questions about the availability of resources to meet growing demands in the treatment of children with complex long-term conditions.

This research work has also been presented at several conferences with papers submitted for publication. This includes work on mortality in vulnerable mothers with opioid use during pregnancy, which found that mothers with opioid use were 11 times more likely to die during the 10 years after childbirth. UCL also explored time to next live birth for vulnerable mothers, finding that women with records indicating vulnerability, such as mental health problems, age <20 years or high parity (defined as the number of pregnancies reaching viable gestational age (including live births and stillbirths), will have a next child faster than the other women. Additionally, UCL presented work on cumulative exposure to child maltreatment or neglect for children in their first five years of life as recorded in hospital records.

These results have been fed back to the Department of Health and will inform the next years of the CPRU programme.

The data is requested for a programme of research relevant to the aims of the of the National Institute of Health Research Children and Families Policy Research Unit (CPRU), within University College London (UCL).

CPRU is one of 15 NIHR Policy Research Units formed to undertake research to inform decision-making by government and arms-length bodies. CPRU works closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England.

The legal basis for processing personal data for this purpose data at UCL falls under Article 6(1)(e) of the General Data Protection Regulations (GDPR), i.e. “a task carried out in the public interest”. It also falls under Article 9(2)(j), “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.

It is in the public interest because the research influences Department of Health policy makers, service providers, healthcare professionals and the general public. This directly benefits the health of children and the healthcare provided to children in the here and now and this is key to reducing future burden on the NHS.

For this programme of research, UCL are the sole Data Controller who also process data.

The objectives of the research are:

a) To determine variation in use of secondary care services by children and young people over time and their transition to adult services. UCL will analyse variation by patient characteristics (e.g. age, gender, General Practice (GP) registration), and by area/unit level area characteristics such as trust, practice characteristics such as Quality Outcomes Framework (QOF) scores, and area indicators for deprivation.

b) To determine risk factors for emergency use of secondary care and risk factors for recurrent use (e.g. according to individual patient characteristics such as age, chronic and mental health conditions, deprivation, sex), past use (e.g. frequency and type of past contact such as Accident & Emergency (A&E), community health services, or admissions). UCL will also examine NHS trust and area factors associated with secondary care use. Where possible, UCL will use birth cohort analyses, based on postnatal admissions of children linked to maternity to maternal risk factors (e.g.: maternal age and mental health problems, engagement with community health services) and birth factors (e.g.: birth weight, prolonged stay in neonatal intensive care), to investigate associations with risk of emergency use of secondary care and other outcomes, including mortality. These analyses require the linkage to birth notification an birth registration data to ensure complete recording of key risk factors including birth weight and gestational age (see further detail below) .

c) UCL will conduct prognostic analyses for children and young people based on diagnosis and procedure codes to identify risk factors for emergency hospital care and for subsequent long-term adverse outcomes into adulthood (e.g.: further emergency admissions or death).

d) UCL would also like to request all mortality records for deaths registered in England from 1st January 1998 until as late as possible, for all persons who died aged 0-55; in other words, both records that link to Hospital Episode Statistics (HES) as well as those that do not link to HES. UCL need all deaths in order to assess the degree of misclassification of outcome (alive/dead) due to linkage errors between mortality and HES datasets. It is crucial that UCL get the age at death on the mortality records in order to do this. Full dates of death is required to be able to estimate age of death in days for the work on infant mortality (for instance, to be able to distinguish between first week from later neonatal deaths and from postneonatal deaths), as well as for the work on cause specific mortality where UCL classify deaths based on admissions within a certain number of days from death.

Additionally, having date of death available enables UCL to determine delay in death registration for data validation.

Along with the outcomes for children and young people, UCL wish to examine health of their mothers. UCL are required to fully understand the health outcomes for children and young people and to do this, it is also important to look at the health of the mothers. UCL request data for people up to age 56 years in order to capture the health of all mothers before and after the time of giving birth. Up to age 56 has been chosen as it is believed the most likely upper age limit for a mother giving birth will be around aged 50 and this will allow 5 years follow up. It is not possible to minimise the data to women only due to technical capabilities and the potential for confusion within the data.

AMENDMENT REQUEST

In this amendment, UCL are requesting additional access to the Community Services Dataset, Maternity Services Dataset, Mental Health Services Dataset (and predecessors), civil registrations (birth registrations), birth notifications, COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) and Public Health England Second Generation Surveillance System (SGSS) data to build upon the existing work and aims of the research project.

These additional datasets are being requested to build on UCLs existing programme of work. The objectives of the work of CPRU UCL will remain the same, but the additional datasets will allow UCL to explore healthcare service use in more detail, including healthcare that occurs in the community, antenatal service use and engagement with mental health services. Additionally, this will allow for broader and more inclusive definitions of long-term conditions and vulnerability in children and young people. Additionally, as a response to the COVID19 crisis, UCL have added an objective to examine the risk of confirmed COVID19 infection according to demographic, clinical and ethnic risk groups in children.

This additional objective is as follows:

UCL will estimate the risk of confirmed COVID19 infection in children according to factors including age, gender, shielding status (of the children and young people), prematurity and ethnic group. UCL will also examine the impact of physical distancing measures and school closures on the epidemiology of other respiratory infections (as available in SGSS). This requires linkage to Public Health England SGSS data and COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) data on COVID19 test results as well as test results. UCL are requesting dates of sample collection, date of test, virus tested for, and test results for all children and young people aged <25 years old to be linked to the other requested datasets for the period January 2020 to the latest date available.

UCL will use ICD-10 codes from previous hospital contacts within HES to identify children and young people who are likely to be on the shielding list. As some of the research objectives centre around children with long-term conditions, UCL will use shielding status to identify those within that group at increased risk of covid-19 infection

The maternity services dataset and birth registration and notifications data will allow UCL to use data that are more complete in compared to UCL’s existing birth cohort studies as outlined under objective b. As shown in research UCL published using just HES data alone, 1 in 3 hospitals have poor recording of delivery data, including variables that are vital risk factors for epidemiological studies such as gestational age and birth weight.

The mental health services dataset (MHSD) will allow UCL to assess mental health conditions in children more comprehensively. In current analyses, UCL have included mental health conditions as part of the chronic conditions for objectives b and c. However, the majority of care for children with mental health conditions happens outside of hospital, meaning it is only possible to pick up the most severe case using only HES inpatient diagnostic codes.

UCL request the community services dataset (CSDS) to assess a wider range of risk factors for adverse outcomes in children, as defined under objective c. The CSDS will allow UCL to add important information such as vaccination uptake and health visiting.

UCL request results from COVID19 tests from the COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) (covering the NHS test, trace isolate programme and performed by commercial partners) and results from tests for COVID19 and other respiratory viral infections from the SGSS datasets. This will allow UCL to examine risk factors for confirmed COVID19 infection in children according to key risk factors including ethnic group, age, clinical risk group and sex.

Through UCL's Children and Families Policy Research Unit (CPRU) there will be regular engagement with the Department of Health and Social Care (DHSC) about the CPRU projects during development and outputs, and DoH will review outputs to give feedback. All analyses undertaken as part of this programme of research for the policy research unit aim to provide evidence to inform health care professionals, service providers, policy makers, and service users about children’s health and how services meet their needs.

Other outputs include presentations to service providers through meetings with the RCPCH (Royal College of Paediatricians and Child Health), the North London Collaborations for Leadership in Applied Research and Care (CLAHRC), and through the Academic Health Sciences Network (AHSN). Updates will also be provided to the Parliamentary Office of Science and Technology. The findings will also be presented to clinicians at clinical practice meetings including but not limited to the Royal College of Paediatrics and Child Health in April/May 2021-2022. This engagement is occurring with the direct goal of changing practice in the health care field.

The findings will also be published in peer reviewed journals (for details see end of section 5c) and policy briefings for the DHSC. The projects in this application are expected to finish by early 2023.

Specifically, the research will inform DHSC policy makers, service providers and practitioners about patient and service factors associated with emergency use of secondary care and long-term adverse outcomes through the child life course and into adulthood. The research programme will engage with DHSC policy makers, practitioners and public during the research, to refine questions and applications of findings, and during the dissemination phase. In this way, UCL will ensure that the study is relevant to NHS systems and UCL will endeavour to feedback results to the NHS.

The mechanisms for engagement and dissemination with NHS systems and the public are as follows:

a) UCL has well-established mechanisms for patient and public involvement. This is facilitated by the National Children’s Bureau (NCB) Research Centre and other networks.

b) The study is conducted as part of a programme of research for the Children and Families Policy Research Unit (CPRU), funded by the Department of Health Policy Research Programme. CPRU aims to improve the health of children, young people and families by undertaking research to provide evidence for health policy and practice. The CPRU program requires regular engagement with policy makers at the Department of Health.

c) The project team at the Great Ormond Street Institute of Child Health contribute to the Academic Health Science Network at UCL Partners AHSN theme on Integrated children and young people’s programme, which aims to implement research findings into practice. Engagement is also through the CLAHRC, hosted by UCL Partners.

The papers resulting from these studies will be published in peer-reviewed journals (such as the Lancet, Archives of Disease in Childhood, PLoS Medicine, BMJ Open, Clinical Infectious Diseases and Eurosurveillance) and presented at scientific conferences (such as the, International Population Data Linkage Conference, International Society for the Prevention of Child Abuse and Neglect, Royal College of Paediatrics and Child Health annual conference, European Society for Paediatric Infectious Diseases Annual Scientific Meeting, and Informatics for Health conference). UCL aim to present the work at scientific conferences and use feedback provided at these meetings to write up papers to be submitted for publication between 2020 - 2023.

All outputs will be in aggregate form only with small numbers suppressed in line with the HES analysis guide.

UCL have discussed the research objectives with parents of children with learning disability and complex needs from the Great Ormond Street Hospital Biomedical Research Centre Parents and Carers’ Group (PCAG) in Nov 2019. PCAG have advised UCL to focus on the transition from paediatric to adult care, as this is a time when co-ordination of care often breaks down. Following these discussions, UCL have revised their research questions and carried out a study looking at changes in hospital admission rates during transition. UCL shared their findings with the group in Dec 2020 (online) and one parent joined the team as a research advisor (and will be co-author on the paper).

In November 2019 UCL discussed using linked administrative health data, such as HES data, for child health research with the parent advisory group of the National Children’s Bureau.

UCL have also done continued work with the National Children’s Bureau Young Research Advisors group. UCL have previously presented some of their research findings to them, and they helped UCL translate their findings into short animated videos, accessible for children and young people.

Benefits from the data already received include:

UCL’s research has been published in the Journal of the American Medical Association (JAMA) Pediatrics, showing a continued increase in adversity-related injury rates (defined as self-inflicted or related to drug/alcohol use or violence) in teenagers in England. The increases may indicate an increasing problem, particularly in females and for intentional self-injury in males aged 15-19 years. UCL aim to extend this research to determine how early preventive interventions in community services (schools, family, and primary care) can affect presentations to hospital.

Additionally, UCL have had research on children in paediatric critical care accepted for publication in Archives of Diseases in Childhood, showing that the rate of paediatric admissions with indicators of high dependency care increased at a faster rate in hospitals without a dedicated PICU between 2008 and 2016. This finding raises questions about the availability of resources to meet growing demands in the treatment of children with complex long-term conditions.

This research work has also been presented at several conferences with papers submitted for publication. This includes work on mortality in vulnerable mothers with opioid use during pregnancy, which found that mothers with opioid use were 11 times more likely to die during the 10 years after childbirth. UCL also explored time to next live birth for vulnerable mothers, finding that women with records indicating vulnerability, such as mental health problems, age <20 years or high parity (defined as the number of pregnancies reaching viable gestational age (including live births and stillbirths), will have a next child faster than the other women. Additionally, UCL presented work on cumulative exposure to child maltreatment or neglect for children in their first five years of life as recorded in hospital records.

These results have been fed back to the Department of Health and will inform the next years of the CPRU programme.

The data is requested for a programme of research within the healthcare provision theme of the Policy Research Unit for Children, Young People and Families (CPRU), within University College London (UCL) funded by the Department of Health (DoH).

CPRU is one of 15 NIHR Policy Research Units formed to undertake research to inform decision-making by government and arms-length bodies. CPRU works closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. The prime contract for CPRU is between UCL and the Secretary of State, as such all research projects are agreed with DHSC before commencement.

The legal basis for processing personal data for this purpose data at UCL falls under Article 6(1)(e) of the General Data Protection Regulations (GDPR), i.e. “a task carried out in the public interest”. It also falls under Article 9(2)(j), “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”. It is in the public interest because the research influences DoH policy makers, service providers, healthcare professionals and the general public. This directly benefits the health of children and the healthcare provided to children in the here and now and this is key to reducing future burden on the NHS.

For this programme of research, UCL are the sole Data Controller who also process data.

The objectives of the research are:

a) To determine variation in use of secondary care services by children and young people over time and their transition to adult services. UCL will analyse variation by patient characteristics (e.g. age, gender, GP registration), and by area/unit level area characteristics such as trust, practice characteristics such as Quality Outcomes Framework (QOF) scores, and area indicators for deprivation.

b) To determine risk factors for emergency use of secondary care and risk factors for recurrent use (e.g. according to individual patient characteristics such as age, chronic conditions, deprivation, sex), past use (e.g. frequency and type of past contact such as A&E or admissions). UCL will also examine NHS trust and area factors associated with secondary care use. Where possible, UCL will use birth cohort analyses, based on postnatal admissions of children linked to maternity to maternal risk factors (e.g.: maternal age) and birth factors (e.g.: birth weight, prolonged stay in neonatal intensive care), to investigate associations with risk of emergency use of secondary care and other outcomes, including mortality.

c) UCL will conduct prognostic analyses for children and young people based on diagnosis and procedure codes to identify risk factors for emergency hospital care and for subsequent long-term adverse outcomes into adulthood (e.g.: further emergency admissions or death).

d) UCL would also like to request all mortality records for deaths registered in England from 1st January 1998 until as late as possible, for all persons who died aged 0-55; in other words, both records that link to HES as well as those that do not link to HES. UCL need all deaths in order to assess the degree of misclassification of outcome (alive/dead) due to linkage errors between mortality and HES datasets. It is crucial that UCL get the age at death on the mortality records in order to do this. Full dates of death is required to be able to estimate age of death in days for the work on infant mortality (for instance, to be able to distinguish between first week from later neonatal deaths and from postneonatal deaths), as well as for the work on cause specific mortality where UCL classify deaths based on admissions within a certain number of days from death. Additionally, having date of death available enables UCL to determine delay in death registration for data validation.

What will be done with the data?

UCL will use the requested longitudinal HES data, linked to mortality records, to construct cohorts for a number of patient subgroups defined by age, sex, and clinical characteristics, to achieve the aims identified above. Using these cohorts, UCL will follow patients over time to assess whether they experience the outcomes of interest, and whether these vary in the different subgroups. All analyses will be done within the safe haven.

The data disseminated under this agreement is for hospital activity in England only. This may include Scottish or Welsh residents data if they have accessed an English hospital.

The programme of research in this application informs policy and practice and all proposals and outputs are seen and approved by the Department of Health (DoH). Through UCL's Children and Families Policy Research Unit (CPRU) there will be regular engagement with the DoH about the projects during development and outputs, and DoH will review outputs to give feedback. All analyses undertaken as part of this programme of research for the policy research unit aim to provide evidence to inform health care professionals, service providers, policy makers, and service users about children’s health and how services meet their needs.

Other outputs include presentations to service providers through meetings with the RCPCH (Royal College of Paediatricians and Child Health), the North London Collaborations for Leadership in Applied Research and Care (CLAHRC) and through the academic health sciences network (AHSN). The findings will also be presented to clinicians at clinical practice meetings including but not limited to the Royal College of Paediatrics and Child Health in 2019 and 2020. This engagement is occurring with the direct goal of changing practice in the health care field.

The findings will also be published in peer reviewed journals and policy briefings for the DoH. The projects in this application are expected to finish by early 2022.

Specifically, the research will inform DoH policy makers, service providers and practitioners about patient and service factors associated with emergency use of secondary care and long-term adverse outcomes through the child life course and into adulthood. The research programme will engage with DoH policy makers, practitioners and public during the research, to refine questions and applications of findings, and during the dissemination phase. In this way, UCL will ensure that the study is relevant to NHS systems and UCL will endeavour to feedback results to the NHS.

The mechanisms for engagement and dissemination with NHS systems and the public are as follows:

a) UCL has well-established mechanisms for patient and public involvement through CPRU. This is facilitated by the National Children’s Bureau (NCB) Research Centre.

b) The study is conducted as part of a programme of research for the Children and Families Policy Research Unit (CPRU), funded by the Department of Health Policy Research Programme. CPRU aims to improve the health of children, young people and families by undertaking research to provide evidence for health policy and practice. The CPRU program requires regular engagement with policy makers at the Department of Health.

c) The project team at the Great Ormond Street Institute of Child Health contribute to the Academic Health Science Network at UCL Partners AHSN theme on Integrated children and young people’s programme which aims to implement research findings into practice. Engagement is also through the CLAHRC, hosted by UCL Partners.

The papers resulting from these studies will be published in peer-reviewed journals (such as the Lancet, Archives of Disease in Childhood, PLoS Medicine, BMJ Open) and presented at scientific conferences (such as the, International Population Data Linkage Conference, International Society for the Prevention of Child Abuse and Neglect, Royal College of Paediatrics and Child Health annual conference, and Informatics for Health conference). UCL aim to present the work at scientific conferences and use feedback provided at these meetings to write up papers to be submitted for publication between 2020 - 2022.

All outputs will be in aggregate form only with small numbers suppressed in line with the HES analysis guide.

Benefits from the data already received include:

The data has shown an increase in adversity-related injury rates (defined as self-inflicted or related to drug/alcohol use or violence) in teenagers in England. The increases may indicate an increasing problem, particularly in females and for intentional self-injury in males aged 15-19 years. UCL aim to extend this research to determine how early preventive interventions in community services (schools, family, and primary care) can affect presentations to hospital.

Research has also included work on mortality in vulnerable mothers with opioid use during pregnancy, which found that mothers with opioid use were 11 times more likely to die during the 10 years after childbirth. UCL also explored time to next live birth for vulnerable mothers, finding that women with records indicating vulnerability, such as mental health problems, age <20 years or high parity (defined as the number of pregnancies reaching viable gestational age (including live births and stillbirths), will have a next child faster than the other women.

Results have been fed back to the Department of Health and will inform the next years of the CPRU programme.

The data is requested for a programme of research within the healthcare provision theme of the Policy Research Unit for Children, Young People and Families (CPRU), within University College London (UCL) funded by the Department of Health (DoH).

CPRU is one of 15 NIHR Policy Research Units formed to undertake research to inform decision-making by government and arms-length bodies. CPRU works closely with the Department of Health and Social Care to determine priorities and provide evidence directly to the Secretary of State for Health, government departments and arms-length bodies, such as NHS England and Public Health England. The prime contract for CPRU is between UCL and the Secretary of State, as such all research projects are agreed with DHSC before commencement.

The legal basis for processing personal data for this purpose data at UCL falls under Article 6(1)(e) of the General Data Protection Regulations (GDPR), i.e. “a task carried out in the public interest”. It also falls under Article 9(2)(j), “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.

For this programme of research, UCL are the sole Data Controller who also process data.

The objectives of the research are:

a) To determine variation in use of secondary care services by children and young people over time and their transition to adult services. UCL will analyse variation by patient characteristics (e.g. age, gender, GP registration), and by area/unit level area characteristics such as trust, practice characteristics such as Quality Outcomes Framework (QOF) scores, and area indicators for deprivation.

b) To determine risk factors for emergency use of secondary care and risk factors for recurrent use (e.g. according to individual patient characteristics such as age, chronic conditions, deprivation, sex), past use (e.g. frequency and type of past contact such as A&E or admissions). UCL will also examine NHS trust and area factors associated with secondary care use. Where possible, UCL will use birth cohort analyses, based on postnatal admissions of children linked to maternity to maternal risk factors (e.g.: maternal age) and birth factors (e.g.: birth weight, prolonged stay in neonatal intensive care), to investigate associations with risk of emergency use of secondary care and other outcomes, including mortality.

c) UCL will conduct prognostic analyses for children and young people based on diagnosis and procedure codes to identify risk factors for emergency hospital care and for subsequent long-term adverse outcomes into adulthood (e.g.: further emergency admissions or death).

d) UCL would also like to request all mortality records for deaths registered in England from 1st January 1998 until as late as possible, for all persons who died aged 0-55; in other words, both records that link to HES as well as those that do not link to HES. UCL need all deaths in order to assess the degree of misclassification of outcome (alive/dead) due to linkage errors between mortality and HES datasets. It is crucial that UCL get the age at death on the mortality records in order to do this. Full dates of death is required to be able to estimate age of death in days for the work on infant mortality (for instance, to be able to distinguish between first week from later neonatal deaths and from postneonatal deaths), as well as for the work on cause specific mortality where UCL classify deaths based on admissions within a certain number of days from death. Additionally, having date of death available enables UCL to determine delay in death registration for data validation.

What will be done with the data?

UCL will use the requested longitudinal HES data, linked to mortality records, to construct cohorts for a number of patient subgroups defined by age, sex, and clinical characteristics, to achieve the aims identified above. Using these cohorts, UCL will follow patients over time to assess whether they experience the outcomes of interest, and whether these vary in the different subgroups. All analyses will be done within the safe haven.

The data disseminated under this agreement is for hospital activity in England only. This may include Scottish or Welsh residents data if they have accessed an English hospital.

The programme of research in this application informs policy and practice and all proposals and outputs are seen and approved by the Department of Health (DoH). Through UCL's Children and Families Policy Research Unit (CPRU) there will be regular engagement with the DoH about the projects during development and outputs, and DoH will review outputs to give feedback. All analyses undertaken as part of this programme of research for the policy research unit aim to provide evidence to inform health care professionals, service providers, policy makers, and service users about children’s health and how services meet their needs.

Other outputs include presentations to service providers through meetings with the RCPCH (Royal College of Paediatricians and Child Health), the North London Collaborations for Leadership in Applied Research and Care (CLAHRC) and through the academic health sciences network (AHSN). The findings will also be presented to clinicians at clinical practice meetings including but not limited to the Royal College of Paediatrics and Child Health in 2019 and 2020. This engagement is occurring with the direct goal of changing practice in the health care field.

The findings will also be published in peer reviewed journals and policy briefings for the DoH. The projects in this application are expected to finish by early 2022.

Specifically, the research will inform DoH policy makers, service providers and practitioners about patient and service factors associated with emergency use of secondary care and long-term adverse outcomes through the child life course and into adulthood. The research programme will engage with DoH policy makers, practitioners and public during the research, to refine questions and applications of findings, and during the dissemination phase. In this way, UCL will ensure that the study is relevant to NHS systems and UCL will endeavour to feedback results to the NHS.

The mechanisms for engagement and dissemination with NHS systems and the public are as follows:

a) UCL has well-established mechanisms for patient and public involvement through CPRU. This is facilitated by the National Children’s Bureau (NCB) Research Centre.

b) The study is conducted as part of a programme of research for the Children and Families Policy Research Unit (CPRU), funded by the Department of Health Policy Research Programme. CPRU aims to improve the health of children, young people and families by undertaking research to provide evidence for health policy and practice. The CPRU program requires regular engagement with policy makers at the Department of Health.

c) The project team at the Great Ormond Street Institute of Child Health contribute to the Academic Health Science Network at UCL Partners AHSN theme on Integrated children and young people’s programme which aims to implement research findings into practice. Engagement is also through the CLAHRC, hosted by UCL Partners.

The papers resulting from these studies will be published in peer-reviewed journals (such as the Lancet, Archives of Disease in Childhood, PLoS Medicine, BMJ Open) and presented at scientific conferences (such as the, International Population Data Linkage Conference, International Society for the Prevention of Child Abuse and Neglect, Royal College of Paediatrics and Child Health annual conference, and Informatics for Health conference). UCL aim to present the work at scientific conferences and use feedback provided at these meetings to write up papers to be submitted for publication between 2020 - 2022.

All outputs will be in aggregate form only with small numbers suppressed in line with the HES analysis guide.

Benefits from the data already received include:

UCL’s research has been published in JAMA Pediatrics, showing a continued increase in adversity-related injury rates (defined as self-inflicted or related to drug/alcohol use or violence) in teenagers in England. The increases may indicate an increasing problem, particularly in females and for intentional self-injury in males aged 15-19 years. UCL aim to extend this research to determine how early preventive interventions in community services (schools, family, and primary care) can affect presentations to hospital.

This research work has also been presented at several conferences with papers submitted for publication. This includes work on mortality in vulnerable mothers with opioid use during pregnancy, which found that mothers with opioid use were 11 times more likely to die during the 10 years after childbirth. UCL also explored time to next live birth for vulnerable mothers, finding that women with records indicating vulnerability, such as mental health problems, age <20 years or high parity (defined as the number of pregnancies reaching viable gestational age (including live births and stillbirths), will have a next child faster than the other women. Additionally, UCL presented work on cumulative exposure to child maltreatment or neglect for children in their first five years of life as recorded in hospital records.

These results have been fed back to the Department of Health and will inform the next years of the CPRU programme.