Privacy Notices

Read the private notices relevant to the Child Health Informatics Group.

Below are privacy notices and patient notifications relating to certain projects. If you would like to find out more about how data are used to benefit the public, and how data are kept safe, please visit Understanding Patient Data. Alternatively, you can contact the person name on each project (details below and on our projects page).

The relationship between education and health outcomes for children and young people across England: the value of using linked administrative data

This research is part of the Population Policy and Practice programme, at the University College London (UCL) Great Ormond Street Institute of Child Health (ICH). It uses information collected from administrative sources to conduct research in order to understand the health of children and young people. It is led by Professor Ruth Gilbert. The study is funded by the Economic and Social Research Council through the Administrative Data Research Centre for England, the National Institute of Health Research through the Children and Families Policies Research Unit, and Health Data Research UK for the London site at UCL.

1.1 What is this Privacy Notice about?
This privacy policy outlines the purpose of the research and explains how we will collect and use the data for this study. It also describes how to get further information and what to do if you (or your child) do not want to be part of the study.

1.2 What is this study about?
The purpose of the study is to evaluate associations between education outcomes and use of hospital services in children with and without underlying chronic conditions. The study uses de-identified, linked administrative data from hospitals in England (known as Hospital Episode Statistics) and information on school assessments and absences that are routinely collated for all children in state-funded schools by the Department for Education (DfE National Pupil Database).

1.3 What is the lawful basis for using this information?
The lawful basis for using information collected routinely for administrative purposes for research is the ‘public task.’ This is part of the University’s commitment to ‘integrate education, research, innovation and enterprise for the long-term benefit of humanity.’ The public task basis may be found in Article 6(1)(e) of the General Data Protection Regulation, which states:
‘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.’

1.4 What information will we collect about you (or your child) for the study?
Our study uses the linked, de-identified hospital data that is collected from hospitals and schools in England. This study uses data only for children born between 01/09/1990-31/08/1991, 01/09/1996-31/08/1997, 01/09/1999-31/08/2000 and 01/09/2004-31/08/2005. The use of these data will allow us to evaluate whether there are any associations between education outcomes, such as results of school assessments (eg. key stage tests) or school absences, and use of hospital services in children with and without underlying chronic conditions. We need to evaluate data for the whole of England to take account of variations between local authorities. This will ensure that relevant findings may be applied to different local contexts.

Other information that will be used in the study include:

Hospital Episode Statistics: Geographical information such as hospital, local authority; the type of hospital admission – planned/unplanned, speciality of treatment, length of time spent in hospital, and the reason for hospital admission (diagnosis). Detailed lists of information available in hospital episode statistics may be found here.
National Pupil Database: The other information that will be used in this study are the non-sensitive information from the National Pupil Database (Tier 4 variables). This includes geographical information such as local authority of the school, the type of school. Further details of the National Pupil Database can be found here.

The research team will not have access to personal information that could identify you or your child. The personal identifiers (such as name and postcode) have been removed before transfer of any data to the researchers. The researchers will use data that has been linked using personal identifiers from hospital and education by NHS England. The researchers cannot identify individuals under any circumstances.

1.5 How will the information be used?
The linked health and education data for school children will be used by study in the following ways:

1) To assess how well data matched from different administrative sources can inform child health and education outcomes in England (i.e. hospital and education data). This linkage between hospital and schools data has not been done before for the whole of England. We need to assess whether the data linkage was effective across all age groups and local authorities.
2) To evaluate whether there are any associations between education outcomes, such as results of school assessments (eg. key stage tests) or school absences, and use of hospital services in children with and without underlying chronic conditions. We will examine relevant patient groups to find out whether associations occur in specific age groups or for specific conditions.

Statistical methods will be used to understand patterns in the data and possible associations between school achievement and school absences and use of hospital services.

The findings of the study could be used to develop interventions in schools or better ways to manage hospital care for children with chronic conditions. It may also help to improve health care for children. For example, we will examine whether certain age groups of children or children with certain conditions are missing a lot of school or doing badly at school assessments and whether these patterns are associated with use of hospital services.

We have safeguards to ensure that the study publications cannot identify an individual (i.e. publication via conferences or other printed media e.g. journals).

Automated decision-making, including profiling, is not used in this study.

1.6 Where will the data be stored?
The study data will be transferred to the University research team in an encrypted form (‘scrambled’), where it will be securely stored in the UCL Data Safe Haven. The UCL Data Safe Haven, is a registered data processor under the terms of the Data Protection Act 1998 (Information Commissioner's Office Data Protection Registration: Z6364106).

The research team have permission to keep the data for 5 years (i.e. until September 2021). It will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.7 Your rights

Records held for this research programme are pseudonymised: researchers are not able to identify which records may belong to you. As a consequence, it is not possible for researchers themselves to grant usual data protection rights, and nor is automated decision (including profiling) making applicable.

However, the government department providing access to the records (‘NHS England’) is able to uphold some of your rights, such as your right to request access to your data, rectify your data, or restrict the processing of your data.

For more information on your rights, please consult NHS’s transparency notice as the link below: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register

1.8 Access to your (or your child’s) information in the study?
It will not be possible to access your study data from the University research team data because all the personal information will removed. You however have the right to access any personal information held about you, to have your information processed fairly and lawfully and the right to privacy. These rights are upheld by law and outlined in the Data Protection Act 1998.

1.9 What if I do not want my data to be used in this study?

The UCL research team will not be able to identify you and cannot remove your records from the study directly at your request.

Your choice will not affect the health care or the educational resources you receive.

1.10 How do I contact the Research team (or Data Controller)?
If you have questions or concerns about the study please contact Professor Ruth Gilbert, who is also the data controller for this research:

Prof Ruth Gilbert
Professor of Clinical Epidemiology
W5.05 UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH

Email: r.gilbert@ucl.ac.uk
Telephone: 020 7905 2101

You may also contact the UCL Data Protection Officer:
Data Protection and Freedom of Information (FOI) Officer
University College London
Legal Services, 6th Floor
1-19 Torrington Place
London
WC1E 7HB

Email: data-protection@ucl.ac.uk

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Additional information/links

Information Commissioner’s Office	www.ico.org.uk
National Pupil Database (NPD)	https://www.gov.uk/government/publications/national-pupil-database-user-guide-and-supporting-information
Hospital Episode Statistics	http://content.digital.nhs.uk/hes
UCL Data Safe Haven	https://understandingpatientdata.org.uk/ http://www.ucl.ac.uk/isd/itforslms/services/handling-sens-data/tech-soln
UCL’s Data Sharing Framework Contract with NHS England	https://www.ucl.ac.uk/isd/sites/isd/files/migrated-files/CON-321538-B5D8B.pdf

Education & Child Health Insights from Linked Data (ECHILD)

ECHILD is a linkable collection of longitudinal, administrative datasets from NHS hospitals, state school education, and children’s social care services for the entire population of children and young people born in England since 1984. It was created and led by University College London in partnership with NHS England (NHSE) and the Department for Education (DfE) and funded by ADR UK. ECHILD is accessed via the Office for National Statistics Secure Research Service (ONS SRS) by fully accredited researchers based in the UK who wish to undertake approved research projects.

1. What is this Privacy Notice about?

This privacy notice outlines the purpose of ECHILD and explains how data is gathered. It also describes how to get further information and what to do if you (or your child) do not want to be part of ECHILD.

2. What information do we collect about you (or your child) for ECHILD?

ECHILD uses coded and anonymised data that is routinely collected from NHS hospitals, state schools, and children’s social care services in England for children born on or after 1st September 1984.

Researchers accessing ECHILD data do not have access to personal information that could identify you or your child. The personal identifiers (such as name and postcode of residence) have been removed before the transfer of any data to the researchers. Researchers are not allowed to identify individuals under any circumstances.

To examine health and education outcomes, researchers will use ECHILD data that has been linked by NHS England using personal identifiers. To do so, the Department for Education (DfE) sends only identifiable data (names, date of birth and postcode) but not ‘attribute data,’ such as information about schools or exam results, to NHS England. NHS England link the DfE identifiers to NHS identifiers. For those children who successfully link, NHS England create a linkage key. This linkage key is anonymised and cannot be used to re-identify an individual. After 12 months, NHS England destroy the real-world names, date of birth and postcodes received from the DfE. The anonymous linkage key is securely transferred to ONS SRS where researchers enable the linkage of health and education records. Because the linkage key is anonymised, and because researchers do not have access to identifying data, researchers are not able to identify individuals under any circumstances.

3. How can ECHILD data be used?

ECHILD data will only be used for research that has a clear public benefit in England and Wales to improve the health and well-being of children and young people accessing health, education, and social care services. The specific research purposes (permitted uses) are:

i. Informing preventative strategies by Healthcare and Education services e.g., do disabled children attending schools or living in areas that provide a good level of support in school or social care services for disability have decreased rates of unplanned hospital contacts compared with less supportive schools/areas?
ii. Informing children and their parents e.g., about variation in special educational needs support and outcomes for children with chronic health conditions or disability.
iii. Informing education and clinical practice e.g., investigating whether associations between chronic health conditions and lower school attainment are explained by school absence. The evidence would be important for policies to reduce school absences for children with chronic conditions.
iv. Identifying groups who could benefit from intervention e.g., what are the health outcomes of children post age 16 who have contact with social care services or have special educational needs?
v. Understanding the most effective methods for working with linked health and education data e.g., what the most effective methods for working with linked health and education data are. The complexity of ECHILD increases in proportion to the number of datasets and individuals it contains. Therefore, novel approaches need to be investigated to unlock the full potential of the linked data.

There are safeguards in place to ensure that publications using ECHILD data will not identify any individual. ECHILD data can only be used for research and cannot be used for marketing or commercial purposes, service delivery or contact with individuals.

4. What is the lawful basis for using and sharing ECHILD data?

The lawful basis for using information collected routinely for administrative purposes for research is the ‘public task.’ This is part of the University’s commitment to ‘integrate education, research, innovation and enterprise for the long-term benefit of humanity.’ The public task basis may be found in Article 6(1)(e) of the General Data Protection Regulation, which states:
‘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.’

For special category data, the lawful basis for using the information is ‘Archiving, research and statistics’ in Article 9(2)(j) of the General Data Protection Regulation, which states:

‘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.’

The lawful basis for sharing information with researchers within the ONS SRS falls under the Digital Economy Act 2017 (DEA), which specifies that data can be shared for research that serves the public interest and meets certain ethical and quality standards. The ONS SRS ensures that data are shared in a way that protects the privacy and confidentiality of individuals and organisations and complies with the relevant data protection legislation.

5. Where is the data stored?

The linked health and education data will only be accessible and kept in the ONS SRS. The data excludes any information that could identify an individual and researchers are prevented from deducing an individual's identity. The ONS imposes strict access controls and checks all outputs for potential disclosure of identifiable information.

The ONS follows the ‘Five Safes’ security framework, a set of principles which enable data services to provide safe research access to data. More information can be found here.

The Office for National Statistics, is a registered fee-payer data processor, under the terms of the Data Protection Act 2018 and the Data Protection (Charges and Information) Regulations 2018 (Information Commissioner's Office Data Protection Registration: Z1404686).

The data will be held in the Office for National Statistics Secure Research Service for a total of 5 years, from 2022 to 2027. However, the benefits and ongoing support for ECHILD will be reviewed and confirmed annually. The data provided will not be transferred to other countries.

6. Your rights

Records held in ECHILD are pseudonymised. This means researchers are not able to identify which records may belong to you. As a consequence, it is not possible to grant usual data protection rights, and automated decision-making (including profiling) is not applicable.

However, the government department providing access to the records (‘NHS England') can uphold some of your rights, such as your right to request access to your data, rectify your data, or restrict the processing of your data.

For more information on your rights, please consult NHS England's transparency notice using this link.

7. Access to your (or your child’s) information in ECHILD?

It will not be possible to access your, or your child’s, data by contacting the ECHILD research team because all the personal information will be removed: it will not be possible for researchers to identify you or your child under any circumstances.

Your rights regarding your and your child's data, which includes the right to access any personal information held about you, as well as the rights to rectification, erasure, restriction and the right not to be subject to automated decision-making, are found in the Data Protection Act 2018.

8. What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?

The ECHILD team will not be able to identify you and so cannot remove your records from the ECHILD database directly at your request. This research uses pseudonymised records, which means we cannot identify or remove any records that may belong to you.

You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection’ and ‘opting out’. Please visit NHS's website for further details of how the NHS uses your information and opt out: https://digital.nhs.uk/your-data.

Your choice will not affect the health care or the educational resources you receive.

9. How do I contact the Research team (or Data Controller)?

If you have questions or concerns about the study please contact the UCL ECHILD Project team:

ECHILD Project
W5.05 UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH

Email: ich.echild@ucl.ac.uk
Telephone: 020 7905 2101

Email: data-protection@ucl.ac.uk

10. Right to complain to the Information Commissioner’s Office

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Study of hospital admissions in early-years of life (maternity-baby data study)

This research is part of the Population Policy and Practice programme, at the University College London (UCL) Great Ormond Street Institute of Child Health (ICH), in collaboration with the Clinical Effectiveness Unit and the Royal College of Surgeons of England (RCS). It uses information collected from administrative sources to conduct research in order to understand the health of children and their families. It is led by Dr Katie Harron and funded by Wellcome Trust.

1.1 What is this Privacy Notice about?
This privacy notice outlines the purpose of the research and explains how we will collect and use the data for this study. It also describes how to get further information and what to do if you (or your child) do not want to be part of the study. You have the right to access any personal information held about you, to have your information processed fairly and lawfully and the right to privacy. These rights are upheld by law and outlined in the Data Protection Act 1998.

1.2 What is this study about?
We are using NHS hospital data to describe the use of hospital services by young children and how this might be linked to the health of a child’s mother during and prior to pregnancy. The study aims to provide a better understanding of how the health of the mother and child are inter-related, and help inform improvements to maternity services and child health. We have some understanding about how a child’s health is linked to the circumstances of the mother during pregnancy. For example, mothers who smoke during pregnancy are more likely to give birth to smaller babies. These circumstances may also influence how often children are admitted to hospital. This study is looking at this issue using hospital data that are routinely collected within the NHS. This avoids the time and cost involved with collecting new data on large numbers of people. It also allows information on maternal and baby healthcare records to be brought together. At present, healthcare information for mothers and babies is not routinely linked and there is a lack of information on which maternal factors are most important.

1.3 What is the lawful basis for using this information?
The lawful basis for this study falls under Article 6(1)(f) of the GDPR, i.e. the 'legitimate interests' of healthcare research. 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.'

1.4. What information will we collect about you (or your child) for the study?
We will use hospital data for mothers and babies that are collected by the National Health Service for births between 01 April 2001 and 31 March 2013. We will also use information on deaths, collected by the Office for National Statistics. NHS Hospital Episode Statistics are made available by NHS England, and include the following personal data:

Clinical/Management information such as the type of hospital admission – planned/unplanned, speciality of treatment, length of time spent in hospital, the reason for hospital admission (diagnosis).
Geographical information such as hospital, local authority.

Hospital and mortality data will be de-identified before it is transferred to the research team. This means that personal identifiers will be removed. However, we will use some personal sensitive data. We will use baby’s date of birth, so that length of stay in hospital after birth, and time to subsequent readmission can be calculated. We will also use date of death, as it is important to take deaths into account as an important outcome measure within these analyses. Once these variables have been derived, date of birth and date of death will be deleted from the data. It will not be possible to identify any individual within the data. Detailed lists of the information collected in hospital may be found here.

1.5 How will the information be used?
We are using NHS hospital data to describe the use of hospital services by young children and how this might be linked to the health of a child’s mother during and prior to pregnancy. The study aims to provide a better understanding of how the health of the mother and child are inter-related, and help inform improvements to maternity services and child health.

We have some understanding about how a child’s health is linked to the circumstances of the mother during pregnancy. These circumstances may also influence how often children are admitted to hospital. This study is looking at this issue using hospital data that are routinely collected within the NHS. This avoids the time and cost involved with collecting new data on large numbers of people. It also allows information on maternal and baby healthcare records to be brought together. At present, healthcare information for mothers and babies is not routinely linked and there is a lack of information on which maternal factors are most important.

To date, we have published three papers for this study:

1. Harron K, Gilbert R, Cromwell D and others. Linking data for mothers and babies in de-identified electronic health data. PLoS One 2016;11:e0164667.
2. Harron K, Gilbert R, Cromwell D and others. International comparison of emergency hospital use for infants: data linkage cohort study in Canada and England. BMJ Qual Saf 2018;27:31–9.
3. Harron K, Gilbert R, Cromwell D and others. Newborn length of stay and risk of readmission. Paediatr Perinat Epidemiol 2017;31:221–32.

Further outputs of the analysis, in the form of aggregate data with small numbers suppressed, will be submitted for publication in peer-review journals and presented at national and international conferences. Results will disseminated to healthcare professionals, NHS managers, commissioners and policy makers. The study team is also closely linked with ongoing maternity service evaluation conducted by the Royal College of Obstetricians (RCOG). The RCOG set standards for clinical practice, publish clinical guidelines and patient information leaflets, contribute to policy development, and advise the government and other public bodies on healthcare matters.

Data in this study will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.6 Where will the data be stored and how long will it be retained?
Data will be stored on the secure server at the Royal College of Surgeons (RCS). The RCS is a registered data processor under the terms of the Data Protection Act 1998 (Information Commissioner's Office Data Protection Registration: Z5948910). The research team have permission to keep the data until December 2019.

1.7 Access to your (or your child’s) information in the study?
It will not be possible to access your study data from the research team data because all the personal information will be removed. The right to request access to and rectification or erasure of your personal data, or restriction of processing of personal data, and the right to data portability, is restricted.

1.8 What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?
The research team will not be able to identify you and cannot remove your records from the study directly at your request. You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection.’ Please visit NHS's website for further details: https://digital.nhs.uk/your-data.

Your choice will not affect the health care you receive.

1.9 How do I contact the Research team (or Data Controller)?
If you have questions or concerns about the study please contact Dr Katie Harron:

Dr Katie Harron
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH

Email: k.harron@ucl.ac.uk
Telephone: 020 7905 2101

RCS is the Data Controller for this study, and the clinical effectiveness unit can be contacted at ceu@rsceng.ac.uk. If you have any questions about how RCS uses personal data, you can contact their Data Protection Officer: dpo@rcseng.ac.uk.

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Additional information/links

Information Commissioner’s Office: www.ico.org.uk
Hospital Episode Statistics: content.digital.nhs.uk/hes

Evaluating the Family Nurse Partnership in England

1.2 What is this study about?
More than 20,000 babies are born to teenage mothers in England each year, but younger mothers often face challenges that put them at a disadvantage compared with older mothers. Additional support for pregnant teenagers may improve outcomes for mothers and their children, but we do not yet know how best to implement services that are available. We aim to describe how an early support programme called the Family Nurse Partnership (FNP) is delivered across England, and to determine the contexts in which the programme is most effective.

1.3 What is the lawful basis for using this information?
The lawful basis for using information collected routinely for administrative purposes for research is the ‘public task’. This is part of the University’s commitment to ‘integrate research and innovation for the long-term benefit of humanity’. The public task basis may be found in Article 6(1)(e) of the General Data Protection Regulation, which states: “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 processing also falls under Article 9(2)(j), which states: “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.

1.4. What information will we collect about you (or your child) for the study?
We will use hospital data for mothers and babies that are collected by the National Health Service for births between 01 April 2010 and 31 March 2017. We will also use information on deaths, collected by the Office for National Statistics. For participants in the Family Nurse Partnership, we will use information that was routinely collected as part of engagement with the programme.

NHS Hospital Episode Statistics are made available by NHS England, and include the following personal data:

Clinical/Management information such as the type of hospital admission – planned/unplanned, speciality of treatment, length of time spent in hospital, the reason for hospital admission (diagnosis);
Geographical information such as hospital, local authority.

Detailed lists of the management information collected in hospital may be found here (See ‘Data elements’). FNP data are made available through the FNP National Unit and include information from the mother and child collected through the programme (e.g. mother’s age, maternal health, baby’s birth weight, gestational age) and at regular intervals until 24 months after birth (including child health and development). Information on each visit is also collected (e.g. date, length of visit, family nurse seen, referrals to other services, etc.).

Education and social services data are made available by the Department for Education, and include pupil characteristics, KS4 and KS5 attainment, absences, exclusions, Children Looked After and Children In Need.

Hospital, FNP, mortality and education data will be de-identified before it is transferred to the research team. This means that personal identifiers will be removed. We will use date of death, as it is important to take deaths into account as an important outcome measure within these analyses. It will not be possible to identify any individual within the data.

1.5. How will the information be used?
We will use electronic records that are routinely collected as part of health services to compare outcomes for FNP participants with similar families who did not participate. We will look at a range of health outcomes for children and their mothers. Researchers will only access anonymised data and will not be able to identify any individuals from the data.

Finding out whether FNP works better for some families (e.g. the youngest teenagers) than others will help improve targeting of resources and highlight groups in need of alternative support. Findings from the study will help policy-makers decide whether FNP should be offered to families in their local setting. Evidence generated by this study will support commissioners in providing improved services for mothers and children who could benefit most, and lead to increased efficiency through more effective targeting of resources.

Outputs of the analysis, in the form of aggregate data with small numbers suppressed, will be submitted for publication in peer-review journals and presented at national and international conferences. Results will be disseminated to healthcare professionals, NHS managers, commissioners and policy makers. Data in this study will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.6. Where will the data be stored and how long will it be retained?
The FNP and hospital data will be transferred to the University research team in an encrypted form (‘scrambled’), where it will be securely stored in the UCL Data Safe Haven. The UCL Data Safe Haven, is a registered data processor under the terms of the Data Protection Act 1998 (ICO Data Protection Registration: Z6364106). The final linked dataset, including education data, will be stored on the Office for National Statistics Secure Research Service.

The research team have permission to keep the data until January 2022. It will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.7 Access to your (or your child’s) information in the study?
It will not be possible to access your study data from the research team data because all the personal information will be removed. Due to this, the right to request access to and rectification or erasure of your personal data, or restriction of processing of personal data, and the right to data portability, is restricted.

1.8 What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?
The research team will not be able to identify you and cannot remove your records from the study directly at your request. You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection’. Please visit NHS's website for further details: https://digital.nhs.uk/your-data.

Your choice will not affect the health care you receive.

1.9 How do I contact the Research team (or Data Controller)?
If you have questions or concerns about the study please contact Dr Katie Harron:

Dr Katie Harron
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London. WC1N 1EH
Email: k.harron@ucl.ac.uk
Telephone: 02079052101

You may also contact the Data Controller (Prof Ruth Gilbert):
Prof Ruth Gilbert
Professor of Clinical Epidemiology
W5.05 UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London. WC1N 1EH
Email: r.gilbert@ucl.ac.uk
Telephone: 02079052101

You may also contact the UCL Data Protection Officer:
Lee Shailer
Data Protection and Freedom of Information (FOI) Officer
University College London
Legal Services
6 th Floor
1-19 Torrington Place
Email: l.shailer@ucl.ac.uk

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Additional information/links:
Information Commissioner’s Office: www.ico.org.uk
Hospital Episode Statistics: http://content.digital.nhs.uk/hes

Evaluating variation in special educational needs provision for children with Down's syndrome and associations with emergency use of hospital care

This privacy notice outlines the purpose of this research and how we will collect and use the data for this study. It also describes how to get further information and what to do if you (or your child) do not want to be part of the study.

You have the right to access any personal information held about you, to have your information processed fairly and lawfully and the right to privacy. These rights are upheld by law and outlined in the Data Protection Act 2018 and the General Data Protection Regulation (GDPR).

Purpose of the research

The study aims to provide a better understanding of trends in Down's syndrome and its associated impacts on health and mortality; assess variation in the types of special educational needs (SEN) services provided to children with Down's syndrome over time and between regions, and investigate the relationship between SEN services and health for children with Down's syndrome. For example, the study will examine whether access to different types of SEN service impact on health of children with Down's syndrome or otherwise reduce the need for services delivered through outpatients clinics or emergency departments. This study is looking at this issue using data that are routinely collected within the NHS, the Department for Education and the Office for National Statistics. This avoids the time and cost involved with collecting new data on large numbers of people. At present, aside from mortality and hospital data, these data are not routinely linked and the relationships between health and education are poorly understood.

Information collected for this research

This research uses data for people with Down syndrome born between 1 April 1997 and 31 March 2020. These data are a subset of the data used for the ECHILD project described above.

We will use hospital admissions data collected by the National Health Service (Hospital Episode Statistics for England), information on deaths recorded by the Office for National Statistics, and information about education and social care from the Department for Education (National Pupil Database).

Hospital Episode Statistics and ONS mortality data are made available by NHS England, and include the following information:

A unique pseudonymised identifier called HESID which allows hospital admissions relating to the same individual, and their ONS death record, to be linked. For data released from April 2021, HESID will be replaced with a new patient ID developed by NHS England but it will be possible to map this new identifier to HESID.
Clinical/Management information such as the type of hospital admission – planned/unplanned, speciality of treatment, length of time spent in hospital, the reason for hospital admission (diagnosis).
Geographical information such as hospital, local authority.
Date and cause of death

Detailed lists of the management information collected in hospital may be found here (See ‘Data elements’).

National Pupil Database data are to be made available by the Department for Education and include:

•   A pseudonymised identifier called the anonymised Pupil Matching Reference (aPMR). aPMR allows linkage of education records for the same pupil in different settings and over time.
•   Type of special educational needs services provided.
•   Attendance at school and educational outcomes.
•   Provision of alternative care services.
Detailed information about the National Pupil Database is available here.

In order to examine health and education outcomes, the researchers will use data that has been linked by NHS England using personal identifiers (such as name, date of birth, address and NHS number) from hospital and education data as part of the ECHILD project (described in a previous section).

To achieve the ECHILD linkage, the Department for Education sent only identifiable data (names, date of birth and postcode) but not ‘attribute data’, such as information about schools or exam results, to NHS England. NHS England linked the identifiers from the Department for Education to NHS identifiers. For those children who linked, NHS England created a study linkage key. This linkage key is anonymised and cannot be used to re-identify an individual. NHS England will destroy the real-world names and postcodes received from the Department of Education after 24 months. The anonymous study linkage key enables researchers to link health and education records. Because the study linkage key is anonymised, and because UCL researchers will not have access to identifying data, the researchers will not be able to identify individuals under any circumstances.

Legal and ethical permissions

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. the “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”.

Personally identifying information (including names, addresses, dates of birth and NHS numbers) will be processed by Public Health England, NHS England and the Office for National Statistics in order to link the data. This is conducted under section 251 of the National Health Services Act (2006) and its Regulations, the Health Service (Control of Patient Information) Regulations(2002), with approval from the Secretary of State for Health and Social Care via the Confidentiality Advisory Group (CAG reference: 16/CAG/0015).

Ethical approval for this research was granted by the Health Research Authority's London – Camden and Kings Cross Research Ethics Committee (reference: 16/LO/0094).

Outputs from the research

We are using these data to describe:

Trends in incidence of Down's syndrome among live births in England
Trends in mortality for people with Down's syndrome in England
Health and use of health services for people with Down's syndrome compared to people without Down's syndrome
Provision of SEN services to children with Down's syndrome, including how these have changed over time and between geographic regions
The relationships between SEN service, health outcomes and use of healthcare service provided by the NHS.
The quality of this administrative data, statistical methods linking the data and for addressing data quality issues in analysis.

Outputs of the analysis, in the form of anonymised aggregate statistics, with small numbers suppressed, will be submitted for publication in peer-review journals and presented at national and international conferences. Results will disseminated to healthcare professionals, NHS managers, commissioners and policy makers. Findings will also be shared with the Down's Syndrome Medical Interest Group. No individuals will be identified in the outputs of this work.

Data in this study will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

Data storage and retention

The linked health and education data will only be accessible in the Office for National Statistics Secure Research Service. Information about the ‘Five Safes’ security framework of this service can be found here.

The Office for National Statistics, is a registered fee payer (data processor) under the terms of the Data Protection Act 2018 and the Data Protection (Charges and Information) Regulations 2018 (Information Commissioner's Office Data Protection Registration: Z1404686).

The data will be held in the Office of National Statistics Secure Research Service for three years, from 1 July 2020 to 30 June 2023. It will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

Access to your (or your child’s) information

It will not be possible to access your study data from the research team data because the personally identifying information will have been removed. To exercise your right to request access to and rectification or erasure of your personal data in the future, or restriction of processing of personal data, and the right to data portability, we direct you to the data providers listed above and at the end of this notice.

What if I do not want my data to be used in this study?

The UCL research team will not be able to identify you and cannot remove your records from the study directly at your request.

You have the right to tell NHS England if you do not want the information you provide to them to be used beyond the purpose of providing healthcare. This is known as an "opt-out". Please visit NHS’s website for further details: https://digital.nhs.uk/your-data. Your choice will not affect the health care you receive.

Your choice will not affect the health care or the educational resources you receive.

Further information

This research is led by Professor Ruth Gilbert at University College London (UCL). It is supported by funding from the Economic and Social Research Council (through the Administrative Data Research Centre for England), The National Institute for Health Research (through the NIHR Great Ormond Street Hospital Biomedical Research Centre) and Department for Health (through the Policy Research Unit in the Health of Children, Young People and Families). University College London is acting as Data Controller for the administrative data used in this research. The research forms part of the Population Policy and Practice programme, at the University College London and Great Ormond Street Institute of Child Health (ICH), in collaboration with Public Health England (PHE).

If you have questions or concerns about the study please contact Professor Ruth Gilbert:

Prof Ruth Gilbert
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London. WC1N 1EH
Email: r.gilbert@ucl.ac.uk
Telephone: 020 7905 2101

University College London is the Data Controller for this study. If you have any questions about how UCL uses personal data, you can contact the Data Protection Officer: data-protection@ucl.ac.uk.

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Useful information/links

Information Commissioner’s Office	www.ico.org.uk
National Pupil Database (NPD)	http://www.gov.uk/collections/national-pupil-database
Hospital Episode Statistics	http://content.digital.nhs.uk/hes
PHE National Congenital Anomaly and Rare Disease Registration Service (provider of data from the superseded National Down's Syndrome Cytogenetic Register)	https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs

Children and Family Policy Research Unit (CPRU)

This privacy notice outlines the purpose of this research programme and how we will collect and use the data. It also describes how to get further information and what to do if you do not want to be part of the study.

Purpose of the research

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. We 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). We will also examine NHS trust and area factors associated with secondary care use. Where possible, We 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.

c) We 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) We will estimate the risk of confirmed COVID19 infection in children according to factors including age, gender, shielding status, prematurity and ethnic group. We will also examine the impact of physical distancing measures and school closures on the epidemiology of other respiratory infections.

What will be done with the data?

We will use longitudinal HES, maternity, community services and mental health data, linked to civil death and birth registrations, to construct cohorts for a number of patient subgroups, and 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.

Information collected for this research

We have a data sharing agreement with NHS England (NIC-393510-D6H1D) which authorises us to hold records from the Hospital Episode Statistics database, which contains records on all admissions, outpatient appointments and Accident & Emergency attendances at NHS hospitals in England. We also hold the Maternity Services Dataset, Community Services Dataset and Mental Health services Dataset which contain records on contacts with those services. We also have authorisation to hold and process records for deaths and births registered in England. Finally, we hold the National Pathology Exchange (NPEX) and Public Health England Second Generation Surveillance System (SGSS) data. This study uses data for people aged up to 56 years.
The specific dataset we are authorised to process by NHS England does not contain direct identifiers such as NHS number, names, dates of birth or addresses. However, it does contain information on your age at every hospital episode, the census areas in which you reside or have resided and your ethnic group. In addition, it contains information on death registration (date of registration, date of death, causes of death) which is regarded as personal data. Because these records are held on certified secure computer network known as the UCL Data Safe Haven, these records are considered to be kept sufficiently safe and restricted so that only approved researchers have access to them, and that they could not guess who you are from these records.
Below are a few links to learn more about the different datasets:

Hospital Episode Statistics: https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics
Emergency Care Data Set (ECDS): https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/emergency-care-data-set-ecds
Maternity Services Data Set: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/maternity-services-data-set
Community Services Data Set: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/community-services-data-set
Mental Health Services Dataset: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/mental-health-services-data-set
Death registration data: https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/linked-hes-ons-mortality-data
National Pathology Exchange data: https://www.npex.nhs.uk/
How NHS data is used and why: https://understandingpatientdata.org.uk
UCL’s Data Sharing Framework Contract with NHS England: https://www.ucl.ac.uk/isd/it-for-slms/research-ig/approved-information-governance-documents
NHS’s own information about how they protect, control and process your records: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe

Legal permissions

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”.

Outputs from the research

The measurable benefits to the health service will be in improving the understanding of longitudinal patterns of emergency health care use overall and which groups (e.g. with chronic conditions) are most at risk. The study will provide new knowledge about long-term outcomes across the child life course and into adulthood.
Specifically:

Assessing the use of hospital service and relevant outcomes, including mortality before and after transition from paediatric to adult health care for young people with chronic conditions and mental health problems,
Assessing variation in readmission rates by hospital and determine to what extend this variation is due to case mix (based on the full longitudinal hospitalisation record), organisational factors or changes over time.
Comparing outcomes for vulnerable mothers (e.g. those with a past history of adversity-related injury admissions or contact with mental health services) and children.

The research (using the new data) will extend this type of preventive thinking to a range of population subgroups within the child and young adult age range. The benefits to the service will be in improving the understanding of longitudinal patterns of emergency health care use overall, how use of different services (e.g. community and mental health care) interfaces, and which groups (e.g. with chronic conditions, children with mental health and physical problems, children of vulnerable mothers) are most at risk. The study will provide new knowledge about long-term outcomes across the child life course and into adulthood. The results may be used to inform NHS services through, for example, targeting of preventive care strategies and community health services, evaluation of the quality of care, and development of services and policy to support follow up of risk groups

Data storage and retention

Data will be stored for 36 months on a secure server at University College London. University College London is a registered data processor under the terms of the Data Protection Act 2018 (ICO Data Protection Registration: Z6364106).

Your rights

For more information on your rights, please consult NHS England’s (the government department providing access to records) transparency notice as the link below: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register

What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?

You have the right to tell NHS England if you do not want the information you provide to them to be used beyond the purpose of providing healthcare. This is known as an "opt-out".

Please visit NHS England’s website for further details: https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/. Your choice will not affect the health care you receive.

Further information

This research is led by Professor Ruth Gilbert at University College London (UCL). It is supported by funding from the Department of Health. University College London is acting as Data Controller for the administrative data used in this research.

If you have questions or concerns about the study please contact Professor Ruth Gilbert:

Prof Ruth Gilbert
UCL GOS Institute of Child Health
30 Guilford Street
London WC1N 1EN

University College London is the Data Controller for this study. If you have any questions about how UCL uses personal data, you can contact the Data Protection Officer: data-protection@ucl.ac.uk.

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Useful information/links

Information Commissioner’s Office	www.ico.org.uk
Hospital Episode Statistics	http://content.digital.nhs.uk/hes

Variations in healthy life expectancy

Purpose of the research

The objective for this research programme is to conduct scientific research on variation in healthy life expectancy throughout childhood and adulthood in England. Healthy life expectancy at birth is an estimate of the average number of years individuals live in a state of ‘good’ health or free of chronic illness. Using care records from hospitals in England (Hospital Episode Statistics) and death registration records, researchers will estimate measures of healthy life expectancy for:
• a range of socio-demographic groups; and
• groups of patients (cohorts) with specific conditions or risk factors, for instance exposure to air pollution and other environmental factors.

Doing so, researchers aim to investigate inequalities in survival and healthy life years, as well as identify important medical conditions, health interventions or events associated with loss of life and loss of healthy life.

Information collected for this research

We have a data sharing agreement with NHS England (NIC-06527-J1Q6T) which authorises us to hold records from the Hospital Episode Statistics database, which contains records on all admissions, outpatient appointments and Accident & Emergency attendances at NHS hospitals in England. We also have authorisation to hold and process records for deaths registered in England, which are controlled by the Office for National Statistics.

The specific dataset we are authorised to process by NHS England does not contain direct identifiers such as NHS number, names, dates of birth or addresses. However, it does contain information on your age at every hospital episode, the census areas in which you reside or have resided, and your ethnic group. In addition, it contains information on death registration (date of registration, date of death, causes of death) which is regarded as personal data. Because these records are held on certified secure computer network known as the UCL Data Safe Haven, these records are considered to be kept sufficiently safe and restricted so that only approved researchers have access to them, and that they could not guess who you are from these records.
Below are a few links to learn more about

•   Hospital Episode Statistics: https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics
•   Death registration data: https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/linked-hes-ons-mortality-data
•   How NHS data is used and why https://understandingpatientdata.org.uk
•   UCL’s Data Sharing Framework Contract with NHS England: https://www.ucl.ac.uk/isd/it-for-slms/research-ig/approved-information-governance-documents
•   NHS England's own information about how they protect, control and process your records: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe

Legal and ethical permissions

Ethical approval for this research was granted by the Health Research Authority's London – Camden and Kings Cross Research Ethics Committee (reference: 18/LO/0010).

Outputs from the research

All research conducted as part of the programme’s four studies will pursue at least one of the following aims:
(a)   To investigate inequalities in survival and healthy life across groups, time, or health care organisations
(b)   To identify key medical conditions, health interventions or events and determinants of loss of life and loss of healthy life, including deprivation and/or clinical risk factors
(c)   To develop methodology on processing and drawing inference from HES and death registrations grounded in statistical and epidemiological sciences.

Projects will be subject to conditions set by our remit as well as applications to the Research Ethics Committee, data sharing agreement and Information Governance policies.

Projects that focus solely on patterns of hospital use, without considering survival or a health status (for instance disability) do not come within the remit of this programme.

Data storage and retention

Data will be stored on a secure server at University College London. University College London is a registered data processor under the terms of the Data Protection Act 2018 (ICO Data Protection Registration: Z6364106. See link: Information Commissioners Office).

Your rights

However, the government department providing access to the records (‘NHS England’) is able to uphold some of your rights, such as your right to request access to your date, rectify your data, or restrict the processing of your data.

For more information on your rights, please consult NHS England's transparency notice as the link below: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register.

What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?

You have the right to tell NHS England if you do not want the information you provide to them to be used beyond the purpose of providing healthcare. This is known as an ‘opt-out’.

Please visit NHS England's website for further details: https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/. Your choice will not affect the health care you receive.

Further information

This research is led by Professor Ruth Gilbert at University College London (UCL). It is supported by funding from the Health Data Research UK investment. University College London is acting as Data Controller for the administrative data used in this research.

If you have questions or concerns about the study please contact Professor Ruth Gilbert:

Prof Ruth Gilbert
Professor of Clinical Epidemiology
W5.05 UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London. WC1N 1EH
Email: r.gilbert@ucl.ac.uk
Telephone: 02079052101

University College London is the Data Controller for this study. If you have any questions about how UCL uses personal data, you can contact the Data Protection Officer: data-protection@ucl.ac.uk.
You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Useful information/links

Information Commissioner’s Office www.ico.gov.uk
Hospital Episode Statistics http://content.digital.nhs.uk/hes

Impact of birth characteristics, infant infections, adversity and social deprivation on long term health outcomes for children and their families

Purpose of the research

Our research team focusses on the provision of health services for children, health outcomes for children with chronic conditions, the impact of respiratory infections on use of secondary care services, and the health of vulnerable children and adolescents. We will use data from The NHS National Services Scotland (NSS) to carry out this research. We plan to carry out research under three themes to improve child and adolescent health in the UK. The three themes are:

- Vulnerable children and families

- Influence of birth and infant risk factors on respiratory health in later childhood

- Socio-economic variation in health outcomes for children with chronic conditions, their mothers and siblings

The research objectives for the three themes are:

Vulnerable children and families

a) to investigate long-term outcomes (death, hospital attendance and pregnancy outcomes, including stillbirths and terminations) following adversity-related injuries presenting in adolescents aged 10-24 years
b) to examine how indicators of adversity cluster within families, by jointly investigating paired parent-child outcomes, such as maternal adversity-related injury and child healthcare utilisation.

Influence of birth and infant risk factors on respiratory health in later childhood

c) to determine the mediating contribution of early respiratory infection and other early life-risk factors (including birth weight and prematurity) on the pathway between socioeconomic deprivation and mid-childhood asthma/wheeze phenotypes.
d) to describe asthma/wheeze phenotypes in children aged <10 years old and their associated risk factors, including early life socio-economic position.
e) examine the extent to which interventions focused on improving maternal health during pregnancy or early infant health could reduce asthma prevalence and socio-economic disparities in respiratory health in later childhood

Socio-economic variation in health outcomes for children with chronic conditions, their mothers and siblings

f) to determine how rates of emergency hospital admissions, vaccination uptake, antibiotic prescribing, and mortality vary according to socio-economic status among children with chronic conditions
g) examine how mental and physical health among mothers and siblings of children with chronic conditions vary according to socio-economic status.

Information collected for this research

For this project we will hold data from NSS on: hospital admissions, birth, death and stillbirth registrations, cancer registrations, maternity records, community dispensing data, infant and childhood vaccination records and public health surveillance data on laboratory tests for respiratory viruses. We hold data for all children born in Scotland between 1981 and 2018 and their mothers. These records have been linked together to allow us to examine how children’s health change with age, and how mothers’ health affect the health of their children. The linkage has been carried out by NSS. All the data we hold are de-personalised, that is, we do not hold identifying information such as names, postcodes or NHS or Community Health Index numbers. We hold dates of birth for children so that we can calculate how long children have been followed up; we do not use dates of birth for analyses.

You can find further information about the data via the links below:

- The type of data held by NSS that we are using for research: https://www.ndc.scot.nhs.uk/National-Datasets/index.asp

- Information about the data linkage: https://www.isdscotland.org/Products-and-Services/EDRIS/

- How NHS data is used and why: https://understandingpatientdata.org.uk

- NSS own information about how they protect, control and process your records: https://www.isdscotland.org/About-ISD/Confidentiality/

Legal permissions

Outputs from the research

Vulnerable children and families

The results will help to determine whether hospital services should consider wider health needs (e.g. early pregnancy risk) for young people presenting to hospital with adversity-related injury, as well as indicating where family interventions could improve health adolescents, young people and families. In particular, the research aims to identify high risk groups for whom early interventions may reduce adverse long-term outcomes and reduce healthcare utilisation and costs.

Influence of birth and infant risk factors on respiratory health in later childhood

Asthma is a distressing condition for both the affected children and their parents, and managing asthma is costly for the NHS. The study will provide important insights about the aetiology and pathways to respiratory ill-health in children (particularly those at socioeconomic disadvantage). We will seek to establish what interventions across the early life course is likely to reduce respiratory conditions such as asthma in older children. Such interventions could include a new vaccination programme for RSV, or interventions to reduce maternal smoking during pregnancy. Based on this research we will therefore be able to make specific recommendations about at what point in the early life course interventions to improve health is likely to have the biggest effect on improving respiratory health in childhood and reducing socio-economic disparities.

Socio-economic variation in health outcomes for children with chronic conditions, their mothers and siblings

The results from this study will identify which children with chronic conditions are at greatest risk of adverse outcomes (including mortality and repeated emergency hospital admissions), or less likely to access primary health care services. It will also determine the mental and physical health of their mother and siblings, that is, their main carers. These results will help develop and target interventions to improve the general health and wellbeing of children with chronic conditions, and mitigate the health effects for their families.

Data storage and retention

Data will be stored on a secure server at University College London, and will not be transferred elsewhere. University College London is a registered data processor under the terms of the Data Protection Act 2018 (ICO Data Protection Registration: Z6364106).

We have received approval from the Public Benefit and Privacy Panel to hold the data until 31st March 2021.The data will then be deleted.

Your rights

Records held for this research programme are pseudonymised: researchers are not able to identify which records belong to you. As a consequence, it is not possible for UCL researchers to uphold your rights such as your right to request access to your data, rectify your data, or restrict the processing of your data.

However, the government department providing access to the records (‘NHS National Services Scotland’, NSS) is able to your rights, such as your right to request access to your data, rectify your data, or restrict the processing of your data.

For more information on how NSS upholds your rights, please consult NSS’s privacy notice on the link below: https://www.isdscotland.org/About-ISD/Confidentiality/

Further information

This research is led by Dr Pia Hardelid at University College London (UCL). It is supported by funding from the National Institute for Health Research and the Medical Research Council.

University College London is acting as Data Controller for the administrative data used in this research. You can find further information about how UCL handles data here: https://www.ucl.ac.uk/legal-services/privacy/general-privacy-policy

If you have questions or concerns about the study please contact Dr Pia Hardelid: p.hardelid@ucl.ac.uk, or

Dr Pia Hardelid
UCL GOS Institute of Child Health
30 Guilford Street
London WC1N 1EN

University College London is the Data Controller for this study. If you have any questions about how UCL uses personal data, you can contact the Data Protection Officer: data-protection@ucl.ac.uk.

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Housing, family and environmental risk factors for hospital admissions in children (incorporating PICNIC - England)

Who are we?

We are researchers at University College London (UCL). UCL is the data controller for this project, together with City, University of London.

Why are we doing this project?

Emergency hospital admission rates in children aged less than 15 years have increased by 30% since 2000. These admissions are highly stressful for children and their families, as well as costly for the National Health Service (NHS). In this project, we will look at whether certain household, parental and environmental factors are associated with the probability of a child being admitted to hospital. This will tell us areas where investments in public health, or efforts to improve healthcare access are most likely to lead to improvements in child health, which would reduce the need for emergency hospital admissions.

We will focus on the following two areas:

1) We will examine how building characteristics (such as damp and mould), household overcrowding, and air pollution exposure during pregnancy are associated with the probability of hospital admissions for respiratory infections in babies 2) We will determine whether children whose parents were born abroad, or are less proficient in English, have similar access to primary and community health services as children whose parents were born in the UK.
We will use statistical techniques to show how these factors are associated with the probability of hospital admissions in children. Our methods will take into account parents’ socio-economic circumstances, and whether children have underlying health problems.

2) We will determine whether children whose parents were born abroad, or are less proficient in English, have similar access to primary and community health services as children whose parents were born in the UK.

We will use statistical techniques to show how these factors are associated with the probability of hospital admissions in children. Our methods will take into account parents’ socio-economic circumstances, and whether children have underlying health problems.

The data used in this project

We will use a database containing birth and death registration and hospital records (Hospital Episode Statistics) for 6.7 million children. The children were all born in England between 2005 and 2014. The data were linked by researchers from City, University of London for a previous study, see (https://www.ncbi.nlm.nih.gov/books/NBK541376/). They are held on a secure server at the Office for National Statistics (ONS). The data held include the baby’s sex, birth weight and gestational age, hospital diagnoses and operations for babies and mothers, and parents’ country of birth.
The ONS will link this existing database to 2011 Census data from mothers and their partners (if any), which means information about housing, mother’s and her partner’s education and knowledge of English/English proficiency (self-assessed from the Census data) proficiency will be available for this research project. The existing database will also be linked by to data on outdoor air pollution (from the Department for Environment, Food and Rural Affairs: https://uk-air.defra.gov.uk/data/), and building standards data (from Energy Performance Certificates: https://epc.opendatacommunities.org/) and small-area level data on tobacco expenditure; these data have been modelled at Census output area level by CACI Ltd (https://www.caci.co.uk/). A Census output area has on average 125 households. This will be done by NHS England, who will link the cohort to postcode histories held in the Personal Demographic Service. UCL will then link the postcodes histories to the air pollution, buildings and tobacco expenditure data, before removing the postcodes.

Confidentiality

All data are kept on highly secure servers at the ONS and can only be accessed by a small number of accredited individuals.

The linked database used for this project does not contain names, full addresses or NHS numbers.

Patient Notification/Fair Processing Notice

The identifying information (such as NHS numbers) are kept in a separate database, away from the health data, and cannot be accessed by researchers, only a small number of ONS staff. The linkage to Census data will be carried out by ONS staff using secure methods which are described in detail here: https://www.ons.gov.uk/file?uri=/aboutus/whatwedo/programmesandprojects/theadministrati vedataresearchnetworkcollaboration/adrcsafeguardingpaper_tcm77-404473.pdf .

The air pollution, tobacco expenditure and building characteristics data, which do not include any information about individuals, will be linked to the existing birth database using the mothers’ and babies’ address histories. This will be done by NHS England staff who do not have access to any clinical data. ONS will securely transfer mother and child identifying information (including NHS numbers) to NHS England who will link the mothers and babies to their address histories held in the Personal Demographic Service (https://digital.nhs.uk/services/demographics). These address histories will be returned to the ONS and kept on a secure server where they will be linked to the air pollution, tobacco expenditure and building standards data (available at address or postcode levels) by UCL. Once UCL have linked the postcode histories to the environmental data on air pollution, tobacco expenditure and building standards, the postcode histories will be deleted.

At no point will your or your child’s names, NHS numbers, or full addresses , be kept together with health, Census, air pollution or buildings data. Researchers will not be able to see this identifying information, only de-personalised (referred to as pseudonymised) data about health, family and living conditions. Researchers will have access to dates of birth and death; once the key information needed for analyses have been derived, access to dates of birth and death will be restricted for researchers.

All staff working on this project have a legal duty of confidentiality to protect personal information about mothers and children. All staff working with the data have had special training in keeping data confidential and secure.

We do not solely make decisions about analyses based on automatic processing of data.

Where to find the results

Our results will be published in open access journals so that they can be read online and downloaded for free. We will announce these publications and provide lay summaries of our results on our website: https://www.ucl.ac.uk/child-health/research/population-policy-and-practice/child-health-informatics-group/ and https://www.ucl.ac.uk/child-health/picnic-study. All publications will also be released to the press via the UCL Media Engagement Office.

Legal and ethical permissions

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. the “public task” of healthcare research. 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”.

Personally identifying information (including names, addresses, dates of birth and NHS numbers) will be processed by the Office for National Statistics in order to link the data. This is conducted under section 251 of the National Health Services Act (2006) and its Regulations, the Health Service (Control of Patient Information) Regulations (2002), with approval from the Secretary of State for Health and Social Care via the Confidentiality Advisory Group (CAG reference: 18/CAG/0159).
Ethical approval for this research was granted by the Health Research Authority's London – Queen’s Square Research Ethics Committee (reference: 18/LO/1514).

Data storage and retention

Different parts of the data may be subject to different retention periods as agreed with the different data providers (ONS and NHS England). These retention periods are expected to be until at least 2025. Retention of data is necessary to ensure that analyses can be checked and to adhere to guidelines on reproducibility of research.

Your options

If you would like to know more about the project and how we using your data, please contact us at childhealthdata@ucl.ac.uk. You may also contact the principal investigator, Dr Pia Hardelid, by phone or post, via the UCL Great Ormond Street Institute of Child Health. Contact details are available here: https://www.ucl.ac.uk/child-health/

You are entitled to object to your data, or your child’s data (if you are their legal guardian), being used for this research. If you do not want us to use your or your child’s data, please get in touch using the contact details above. However, note that the UCL research team will not be able to identify you and cannot remove your records from the study directly at your request.
You have the right to tell NHS England if you do not want the information you provide to them to be used beyond the purpose of providing healthcare. This is known as an "opt-out". Please visit NHS's website for further details: https://digital.nhs.uk/your-data. Your choice will not affect the health care you receive.

University College London is one of the Data Controllers for this study. If you have any questions about how UCL uses personal data, you can contact the Data Protection Officer: data-protection@ucl.ac.uk.

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Air Pollution, housing and respiratory tract Infections in Children: National birth Cohort study (PICNIC – Scotland)

Who are we?

We are researchers at University College London (UCL). Public Health Scotland (PHS) are providing health data for use in this project. Both PHS and UCL are separate independent data controllers for any uses of this health data as part of this project, including when linked to other information.

The project is a research collaboration between UCL, University of Edinburgh, City University, London School of Hygiene and Tropical Medicine and Tampere University (in Finland). You can read more about the study on our study page.
What is this research project about?

We will investigate to what extent exposure to air pollution during pregnancy and the first five years of life and poor housing conditions (such as overcrowding and damp/mould) contribute to hospital admissions and medicines dispensed for respiratory tract infections (RTIs) in children less than five years old. We will also examine the association between environmental, clinical and socio-economic risk factors for specific viruses causing RTIs including SARS-CoV-2.

Why are we doing this research?

RTIs, including bronchiolitis and pneumonia, are a key reason for healthcare contact in young children in the UK. They are the most common reason for hospital admission in babies, and three quarters of all antibiotics prescribed in primary care to children are for RTIs. We will examine whether exposure to air pollution in the womb or during early childhood, and poor housing conditions are associated with a child’s risk of developing RTI symptoms requiring a drug prescription or hospital admission.

The data used in this project

We will use data collected from birth certificates, linked to maternity records, hospital admissions, infection surveillance and community dispensing data for all children born Scotland between 1997 and 2020: approximately 1.4 million children in total. The health data will be linked in the first stage. Later in spring 2021, data about children’s air pollution exposure during pregnancy and childhood (from the Department for Environment, Food and Rural Affairs, and Cambridge Environmental Research Consultants https://www.cerc.co.uk/about-us.html), and building characteristics data (the Scottish Energy Performance Certificate and Home Energy Efficiency Database, held by Energy Savings Trust: https://energysavingtrust.org.uk/) will be linked in.

We are also proposing that information about housing and socio-economic background from the 2001 and the 2011 Censuses will be linked to the health data, but this is subject to approvals. If approved, the Census data will be linked to mothers giving birth between 2000 and 2002 for the 2001 Census and 2010 and 2012 for the 2011 Census. The data will be linked by staff at Public Health Scotland. Staff at National Records for Scotland would link the Census data to the health data, if approved.

How will we use the data?

We will use these data to examine whether exposure to air pollution and poor housing conditions are associated with an increased risk of being admitted to hospital with an RTI, or being prescribed an antibiotic or asthma medicine during the first five years of life. We will also examine the association between environment, socio-economic and clinical factors and the risk of testing positive for specific viruses causing RTIs, including SARS-CoV-2.

Confidentiality

All data are kept on the Public Health Scotland National Safe Haven, a highly secure server designed for storage and analysis of sensitive health data, and can only be accessed by a small number of accredited individuals working on the project. You can read more about the National Safe Haven here: https://www.isdscotland.org/products-and-services/edris/use-of-the-national-safe-haven/

The current birth database does not contain any identifying information, such as names, addresses or NHS/Community Health Index numbers.

Where to find the results of the study

Our results will be published in open access journals so that they can be read online and downloaded for free. We will announce these publications and provide lay summaries of our results on our website: https://www.ucl.ac.uk/child-health/research/population-policy-and-practice/child-health-informatics-group/. All publications will also be released to the press via the UCL Media Engagement Office.

Legal and ethical permissions

The legal basis for processing personal data for this purpose data at UCL falls under Article 6(1)I of the General Data Protection Regulations (GDPR), i.e. the “public task” of healthcare research. 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”.
We have ethical approval to conduct this project from the University of Edinburgh School of Geosciences Ethics Committee, reference number 401. The Public Benefit and Privacy Panel for Health and Social Care has approved this study, reference number 1819-0049.

Data storage and retention

Different parts of the data may be subject to different retention periods as agreed with the different data providers (Public Health Scotland, National Records for Scotland, Energy Savings Trust and Cambridge Environmental Research Consultants). Data will be stored until at least the end of the study in December 2025. Retention of data is necessary to ensure that analyses can be checked and to adhere to guidelines on reproducibility of research.

Your options

If you would like to know more about the project and how we using your data, please contact us at p.hardelid@ucl.ac.uk. You may also contact the principal investigator, Dr Pia Hardelid, by phone or post, via the UCL Great Ormond Street Institute of Child Health. Contact details are available here: https://www.ucl.ac.uk/child-health/

Record linkage study to determine the generalisability of the CATCH trial findings (Catheter infections in children)

Privacy notice

Purpose of the research

Most children who are admitted to Paediatric Intensive Care Units (PICUs) need to have their medicines administered into their veins. Because these children are sick and may need fluids and medicines given into their veins urgently if they suddenly deteriorate, they will usually have a central venous catheter (CVC) put in place.

The objective for this research programme is to address the policy question of whether impregnated CVCs should be adopted across NHS PICUs and for which types of patients, based on evidence of clinical and cost effectiveness. If impregnated CVCs are found to be superior, the trial will also inform the decision about which type of impregnated CVC to adopt. As the cost of purchasing both types of impregnated CVC is the same, decisions about which to adopt will be informed by differences in beneficial and adverse clinical outcomes (using primary and secondary outcome measures). The results will either clearly favour one option or will quantify the uncertainty underlying a trade-off of benefits and harms which can be used to inform decisions about the value of further ‘head to head’ comparisons.

Information collected for this research

We have a data sharing agreement with NHS England (NIC-18658-K8C3J) which authorises us to hold records from the Hospital Episode Statistics database, which contains records on all admissions, outpatient appointments and Accident & Emergency attendances at NHS hospitals in England. We also have authorisation to hold and process records for deaths registered in England, which are controlled by the Office for National Statistics.

The specific dataset we are authorised to process by NHS England contains direct identifiers such as NHS number, dates of birth and postcodes. In addition, it contains information on death registration (date of registration, date of death, causes of death) which is regarded as personal data. Accordingly, these records are held on certified secure computer network known as the UCL Data Safe Haven, and are considered to be kept sufficiently safe and restricted so that only approved researchers have access to them.

Below are a few links to learn more about:

- Hospital Episode Statistics: https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics
- Death registration data: https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/linked-hes-ons-mortality-data
- How NHS data are used and why: https://understandingpatientdata.org.uk
- UCL’s Data Sharing Framework Contract with NHS England: https://www.ucl.ac.uk/isd/sites/isd/files/migrated-files/CON-321538-B5D8B.pdf
- NHS England’s own information about how they protect, control and process your records: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe

Legal and ethical permissions

Ethical approval for this research was granted by the Health Research Authority's South West Committee - Exeter (reference: 09/H0206/69).

Outputs from the research

Research conducted as part of this programme objects to determine the effectiveness of heparin coated or antibiotic impregnated CVCs compared with standard CVCs for preventing hospital acquired blood stream infection.

Secondary objectives include:

- To determine the cost effectiveness of heparin coated or antibiotic impregnated CVCs compared with standard CVCs, based on the primary outcome and costs of acute care from the perspective of the NHS.
- To determine the effectiveness of type of CVC in 3-way comparisons of heparin coated versus antibiotic impregnated versus standard CVCs for preventing hospital acquired blood stream infection, based on culture, quantitative bacterial DNA, and clinical measures of infection.
- To determine the effect of type of CVC on clinical measures of care (duration of CVC insertion, duration of antibiotic use, and duration of stay).
- To determine the effect of type of CVC on mortality at 30 days.
- To identify adverse effects of CVC type on pathogen selection, antibiotic resistance, clinical evidence of CVC thrombosis, and thrombocytopenia.

Data storage and retention

Data will be stored for 60 months on secure servers at University College London. University College London is a registered data processor under the terms of the Data Protection Act 2018 (ICO Data Protection Registration: Z6364106. See link: Information Commissioners Office).

Your rights

For more information on your rights, please consult NHS England's transparency notice: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register

What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?

You have the right to tell NHS England if you do not want the information you provide to them to be used beyond the purpose of providing healthcare. This is known as an ‘opt-out’.

Please visit the NHS's website for further details: https://digital.nhs.uk/your-data. Your choice will not affect the health care you receive.

Further information

This research is led by Professor Ruth Gilbert at University College London (UCL). It was supported by funding from the National Institute for Health Research. University College London is acting as Data Controller for the administrative data used in this research.

If you have questions or concerns about the study please contact Professor Ruth Gilbert:

Prof Ruth Gilbert
Professor of Clinical Epidemiology
W5.05 UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London. WC1N 1EH
Email: r.gilbert@ucl.ac.uk
Telephone: 02079052101

University College London is the Data Controller for this study. If you have any questions about how UCL uses personal data, you can contact the Data Protection Officer: data-protection@ucl.ac.uk.

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Useful information/links

Information Commissioner’s: Office www.ico.org.uk
Hospital Episode Statistics: http://content.digital.nhs.uk/hes

Investigating differences in gender mortality for children admitted to UK critical care units

This research is part of a Doctoral Research Fellowship at the Population Policy and Practice programme, at the University College London (UCL) Great Ormond Street Institute of Child Health (ICH). It uses information collected from administrative sources to conduct research in order to understand the impact of critical illness on children.

This project is a collaboration between ICH, Great Ormond Street Hospital, St Mary’s Hospital London Paediatric Critical Care Unit, and Paediatric Intensive Care Audit Network (PICANet). It is led by Mrs Ofran Almossawi and funded by the National Institute of Health Research.

1.1 What is this Privacy Notice about?

This privacy notice outlines the purpose of the research and explains how we will use routinely collected data for this study. It also describes how to get further information and what to do if you (or your child) do not want your data to be used in this study.

1.2 What is this study about?

Every year more than 20,000 children are admitted to PICUs in the UK. Previous small studies have showed that baby girls may have higher mortality rates than baby boys in PICU. In 2017 we completed an analysis of all babies (0-12 months old) who were admitted to PICUs over an 11-year period. We obtained anonymous records for 68,000 babies and compared the rates of death between girls and boys during their admission to PICU. We discovered that girls had higher death rates than boys. This is different to what is seen in the general population where boys have higher death rates than girls for children of all ages. We carefully examined whether this difference could be due to differences in age, disease severity, infections, and a number of other factors. None of the factors could explain why girls died more than boys in PICU. We now want to examine these findings in greater detail as this could have implications for the care of critically ill children generally.

1.3 What is the lawful basis for using this information?
The lawful basis for using information collected routinely for administrative purposes for research is the ‘public task’. This is part of the University’s commitment to ‘integrate research and innovation for the long-term benefit of humanity’.

The public task basis may be found in Article 6(1)(e) of the General Data Protection Regulation, which states: “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 processing also falls under Article 9(2)(j), which states: “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.

1.4. What information will we collect about you (or your child) for the study?

We will not be collecting any new information, just used routinely collected data. We will select all children who were admitted to a Paediatric Critical Care Unit (PICU) in the UK between 01 January 2010 and 31 December 2019. PICU data is collected for any child admitted to PICU nationally as part of the PICANet project. We will also use hospital data for mothers and babies that are collected by the National Health Service for births, and information on deaths, collected by the Office for National Statistics for the same period. PICU admissions are available from PICANet and include the following personal data: Reason for admission, length of stay in PICU, severity of illness on admission, any treatments received during the course of admission

NHS Hospital Episode Statistics are made available by NHS England, and include the following personal data:

For mothers: Clinical/Management information such as birth type if emergency/planned, length of time spent in hospital, any complications at birth, any medical condition during pregnancy or complications during the course of pregnancy, mother’s age, baby’s birth weight, gestational age
For children: reason for admission to PICU, length of stay in PICU, for any deaths in PICU – cause of death
Geographical information such as hospital, local authority.

Hospital, PICANet and mortality data will be de-identified before it is transferred to the research team. This means that personal identifiers will be removed. We will use date of death, as it is important to take deaths into account as an important outcome measure within these analyses. It will not be possible to identify any individual within the data.

1.5. How will the information be used?

We will use electronic records that are routinely collected as part of health services to compare the risk of mortality between girls and boys. We will look at a range of health outcomes for children and their mothers to identify any reasons for differences in mortality in PICU. Researchers will only access anonymised data and will not be able to identify any individuals from the data.

Finding out whether what causes the differences in mortality between girls and boys will help improve targeting of resources and highlight groups in need of alternative support. Findings from the study will help policy-makers decide whether a risk of death scoring based on gender will help improve outcomes for children who are admitted to PICU. Evidence generated by this study will support commissioners in providing improved services for children who could benefit most, and lead to increased efficiency through more effective targeting of resources. It could potentially identify risk factors for mothers that impact on a child’s outcome in PICU.

Data in this study will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.6. Where will the data be stored and how long will it be retained?

The study data will be transferred to the University research team in an encrypted form (‘scrambled’), where it will be securely stored in the UCL Data Safe Haven. The UCL Data Safe Haven, is a registered data processor under the terms of the Data Protection Act 1998 (ICO Data Protection Registration: Z6364106. See link: Information Commissioners https://ico.org.uk/ESDWebPages/Entry/Z6364106).

The research team will request permission through the ethics committee to keep the data until December 2023. It will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.7 Access to your (or your child’s) information in the study?

It will not be possible to access your study data from the research team data because all the personal information will be removed. Due to this, the right to request access to and rectification or erasure of your personal data, or restriction of processing of personal data, and the right to data portability, is restricted.

1.8 What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?

The research team will not be able to identify you and cannot remove your records from the study directly at your request.

You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘opting out’. Please visit the NHS's website for further details: https://digital.nhs.uk/your-data. Your choice will not affect the health care you receive.

1.9 How do I contact the Research team (or Data Controller)?

If you have questions or concerns about the study please contact Ofran Almossawi or the data controller Dr Katie Harron:

Ofran Almossawi, PhD student
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London. WC1N 1EH
Email: o.almossawi@ucl.ac.uk

Dr Katie Harron (Data Controller, and PhD Supervisor)
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London. WC1N 1EH
Email: k.harron@ucl.ac.uk
Telephone: 02079052101

You may also contact the UCL Data Protection Officer:

Data Protection and Freedom of Information (FOI) Officer
University College London
Legal Services, 6th Floor
1-19 Torrington Place
London
WC1E 7HB

Email: data-protection@ucl.ac.uk

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Additional information/links:

Information Commissioner’s Office www.ico.gov.uk
Hospital Episode Statistics http://content.digital.nhs.uk/hes
PICANet https://www.picanet.org.uk/

Download the privacy notice as a PDF.

Understanding the health needs of mothers involved in family court cases

1.1 What is this Privacy Notice about?

This privacy policy outlines the purpose of the research and explains how we will collect and use the data for this study. It also describes how to get further information and what to do if you (or your child) do not want to be part of the study.

1.2 What is this study about?

This study focusses on hospital attendances of mothers who give birth in England and compares those who never go to public law court with mothers involved in care proceedings (family court cases where the local authority applies to have a child removed from parental care due to serious concern over the child’s health or wellbeing). Mothers whose children are placed into public care often have high levels of health needs, such as drug and/or alcohol misuse, exposure to violence, mental health problems or chronic physical conditions. However, information is lacking on how health services address these needs. Our project will use longitudinal data on hospital attendances use to determine the needs of mothers before, during and after care proceedings.

1.3 What is the lawful basis for using this information?

‘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.’

1.4 Legal and ethical permissions

The legal basis for processing personal data for this purpose data at UCL falls under Article 6(1)(f) of the General Data Protection Regulations (GDPR), i.e. the “legitimate interests” of healthcare research. 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”.

Personally identifying information (including names, addresses, dates of birth and NHS numbers) will be processed by NHS England in order to link the data. This is conducted under section 251 of the National Health Services Act (2006) and its Regulations, the Health Service (Control of Patient Information) Regulations (2002), with support from the Health Research Authority via the Confidentiality Advisory Group (CAG Reference: 19/CAG/0018).

Ethical approval for this research was granted by the Health Research Authority's London – Camden and Kings Cross Research Ethics Committee (reference: 19/LO/0103).

1.5 What information will we collect about you (or your child) for the study?

Our study uses the linked, de-identified hospital data that is collected from hospitals and family courts in England. This study uses data only for women in England who had at least one live birth between 01/04/1997 and 31/03/2017 when they were aged between 15 and 50 years of age.

Our analyses of these data will study hospital attendances of women who give birth. We aim to find out whether women who attend public law care proceedings have more healthcare need than similar women who are never involved in care proceedings. If we find an association, we will explore when evidence of healthcare need occurs – before, during or after care proceedings. The findings could lead to testing of interventions to improve the health of vulnerable women and potentially reduce the need for care proceedings, or the impact of care proceedings on women’s health. We need to evaluate data for the whole of England to take account of variations in social care thresholds between local authorities. This will ensure that relevant findings may be applied to different local contexts.

Other information that will be used in the study include:

Hospital Episode Statistics: Geographical information such as hospital, local authority; the type of hospital admission – planned/unplanned, speciality of treatment, length of time spent in hospital, and the reason for hospital admission (diagnosis). Detailed lists of information available in hospital episode statistics may be found here.
Children and Family Court Advisory and Support Service public law data: This includes geographical information such as local authority of residence of the mother, ages of mother and children involved in the case, administrative information about the care proceeding such as application type and hearing dates, and the final legal order. Further details about Cafcass data can be found here.

The research team will not have access to personal information that could identify you. The personal identifiers (such as name and postcode) have been removed before transfer of any data to the researchers. The researchers will use data that has been linked using personal identifiers from hospital and family court by NHS England. The researchers cannot identify individuals under any circumstances.

1.6 How will the information be used?

The linked health and family court data for mothers will be used by study in the following ways:

1) To assess the accuracy of linkage between family court and hospital records in England. This linkage between hospital and family court data has not been done before for the whole of England. We need to assess whether the data linkage was effective across all local authorities.

2) We will use data on hospital attendances of women who give birth in England. We aim to find out whether women who attend public law care proceedings have more healthcare need before, during or after care proceedings than similar women who are never involved in care proceedings.

Statistical methods will be used to understand patterns in the data and possible associations between hearing dates, legal outcomes and use of hospital services.

The findings of the study could be used to develop interventions in health services or better ways to manage hospital care for women involved in family court proceedings. It may also help to improve health care for their children. For example, we will examine whether women are more likely to use emergency hospital care during care proceedings or when a decision to remove their children from their care is made. Knowing whether this happens, and for what reasons women access health care could help prepare services anticipate their needs and help prevent hospital admissions.

We have safeguards to ensure that the study publications cannot identify an individual (i.e. publication via conferences or other printed media e.g. journals).

1.7 Where and how long will the data be stored?

The study data will be transferred to the University research team in an encrypted form (‘scrambled’), where it will be securely stored in the UCL Data Safe Haven for 36 months. The UCL Data Safe Haven, is a registered data processor under the terms of the Data Protection Act 1998 (Information Commissioner's Office Data Protection Registration: Z6364106).

The data will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.8 Access to your information in the study?

It will not be possible to access your study data from the University research team data because all the personal information will removed. You however have the right to access any personal information held about you, to have your information processed fairly and lawfully and the right to privacy. These rights are upheld by law and outlined in the Data Protection Act 1998.

1.9 What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?

The UCL research team will not be able to identify you and cannot remove your records from the study directly at your request. You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection.’ Please visit the NHS website for further details: https://digital.nhs.uk/your-data.

Your choice will not affect the health care or the court resources you receive.

1.10 How do I contact the Research team (or Data Controller)?

If you have questions or concerns about the study please contact Professor Ruth Gilbert, who is also the data controller for this research:

Prof Ruth Gilbert
Professor of Clinical Epidemiology
W5.05 UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH

Email: r.gilbert@ucl.ac.uk
Telephone: 020 7905 2101

Email: data-protection@ucl.ac.uk

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Additional information / links

Information Commissioner’s Office	www.ico.org.uk
Cafcass	https://www.cafcass.gov.uk/about-cafcass/research-and-data/
Hospital Episode Statistics	http://content.digital.nhs.uk/hes
UCL Data Safe Haven	https://understandingpatientdata.org.uk/ http://www.ucl.ac.uk/isd/itforslms/services/handling-sens-data/tech-soln
UCL’s Data Sharing Framework Contract with NHS England	https://www.ucl.ac.uk/isd/sites/isd/files/migrated-files/CON-321538-B5D8B.pdf

Exploring changes in the use of children’s social care over childhood and adolescence in England, from 1994 to 2019

This research is part of the Population Policy and Practice Research and Teaching Department, at the University College London (UCL) Great Ormond Street Institute of Child Health (ICH). It uses information collected from administrative sources to research changes in the use of children’s social care across childhood, over time. It is led by Professor Ruth Gilbert.

1.1 What is this Privacy Notice about?

1.2 What is this study about?

This research project has been designed to explore and examine changes in the use of children’s social services over childhood and adolescence over time in England, up to March 2019. The department for education publish cross-sectional statistics (i.e. snap-shots in time) on children assessed as ‘in need’ of local authority support, including those placed into out-of-home care, by demographics and service-related characteristics; however, these do not account for the complexity of local authority support pathways or the accumulation of contact with local authority children’s social services over the entirety of childhood and adolescence. Contact with children’s social care includes being referred to children’s social care, investigation under section 47 of the children act 1989, being placed under a child protection plan, and being placed into local authority care. Our project will use longitudinal data on children’s contacts with children’s social care services to provide up-to-date estimates of the number of children experiencing these events over childhood and adolescence (i.e. the cumulative incidence). We will also look at how the cumulative incidence has changed over time and how they may differ by demographic characteristics (e.g. such as by ethnicity or by region of England).

1.3 What is the lawful basis for using this information?

The lawful basis for using information collected routinely for administrative purposes for research is the ‘public task.’ This is part of the University’s commitment to ‘integrate education, research, innovation and enterprise for the long-term benefit of humanity.’ The public task basis may be found in Article 6(1)(e) of the General Data Protection Regulation, which states: ‘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.’

For special category data, the lawful basis for using the information is ‘Archiving, research and statistics’ in Article 9(2)(j) of the General Data Protection Regulation, which states:
‘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.’

1.4 What information will we collect about you (or your child) for the study?

Our study uses de-identified children’s social care data that is collected from local authorities in England and collated by the Department for Education. This study uses data only for children in England who had been referred to children’s social care between 01/04/2008 and 31/03/2019 or who had been placed into care between 01/04/1994 and 31/03/2019. The use of these data will allow us to evaluate whether there are any associations between demographic characteristics and children’s contact with children’s social care, including their pathways through local authority care. We need to evaluate data for the whole of England to take account of variations between local authorities. This will ensure that relevant findings may be applied to different local contexts.

These data include the following personal data:

Children’s social care referral information such as date of referral, referral source, and whether a child is subject to a child protection plan
Care placement information such as start and ends dates, legal status, and placement type.
Geographical information such as local authority

Further details of data the Department for Education collects can be found here.

It will not be possible to identify any individual within the data.

1.5 How will the information be used?

The children’s social care data will be used by our study in the following ways:

We will address:

1) how cumulative incidence of entry into care over childhood and adolescence has changed over time;

2)   the cumulative incidence of
a.   referrals to children’s social care,
b.   investigation under S47,
c.   use of child protection plans over childhood; and

3) how variation by region or child characteristics (such as ethnicity or sex) in the cumulative incidence of exposure to children’s social care has changed over time.

The overarching aim of this study is to explore and examine changes in the use of children’s social services over childhood and adolescence over time in England.
Specific questions we seek to answer include:

1) How has the cumulative incidence of exposure to specific children’s social service interventions (including entry into out-of-home care, child protection procedures, and referrals for child in need assessments) over childhood and adolescence changed over time?

2) Can changes to these cumulative incidence estimates over time be attributed to changes to rates of children’s social care intervention within certain groups of children (e.g. by demographic characteristics such as ethnicity, region of LA, age at first entry, unaccompanied asylum-seeking status etc.); for example, children entering care soon after birth or adolescent entry to care?

Statistical methods will be used to describe similarities in longitudinal care experiences over childhood and adolescence (i.e. patterns of children’s pathways through care from birth to age 18 years) and regression models to examine the relationships between demographic and episode-in-care variables.

Child maltreatment and entry into public care are associated with poorer physical, emotional, intellectual and behavioural outcomes among young children and are linked to an increased risk of poor health outcomes later in life such as mental health problems, substance use problems and chronic physical conditions. Therefore, at a time where children’s social care resources increasingly in demand, it is important to gather up-to-date evidence on the longitudinal use of children’s service intervention from birth to adolescence to inform future service planning and resource allocation. There is also evidence that certain aspects of care experience (such as age at first entry, type of placement and placement stability) are associated with differing health and social care outcomes, as well as the financial cost of care provision, in childhood and later in life. Therefore, it is important to also explore the type of care provided to children over the whole of childhood and adolescence and any changes to these trends over time.

We have safeguards to ensure that the study publications cannot identify an individual (i.e. publication via conferences or other printed media e.g. journals).

Automated decision-making, including profiling, is not used in this study.

1.6 Where and how long will the data be stored?

The children’s social care data will only be accessible in the Office for National Statistics Secure Research Service. Information about the ‘Five Safes’ security framework of this service can be found here. The Office for National Statistics, is a registered fee payer (data processor) under the terms of the Data Protection Act 2018 and The Data Protection (Charges and Information) Regulations 2018 (Information Commissioner's Office Data Protection Registration: Z1404686).

The data will be held in the Office of National Statistics Secure Research Service for three years, from January 2021 to 31st December 2024. It will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.7 Your rights

However, the government department providing access to the records (‘Department for Education’) is able to uphold some of your rights, such as your right to request access to your data. For more information on your rights, please consult the Department for Education’s privacy notice using this link.

1.8 Access to your (or your child’s) information in the study?

It will not be possible to access your or your child’s study data from the University research team because all the personal information will be removed: it will not be possible for UCL researchers to identify you or your child under any circumstances.

Your right in general regarding you and your child’s data, which includes the right to access any personal information held about you, as well as the rights to rectification, erasure, restriction and the right not to be subject to automated decision-making, are found in the Data Protection Act 2018.

1.9 What if I do not want my data to be used in this study?

The pseudonymisation of records for this research prevents identification of which records may belong to you. The UCL research team will not be able to identify you and cannot remove your records at your request.

Your choice will not affect the educational resources you receive.

1.10 How do I contact the Research team (or Data Controller)?

If you have questions or concerns about the study please contact Professor Ruth Gilbert, who is also the data controller for this research:

Prof Ruth Gilbert
Professor of Clinical Epidemiology
W5.05 UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH

Email: r.gilbert@ucl.ac.uk
Telephone: 020 7905 2101

You may also contact the UCL Data Protection Officer:

Data Protection Officer
University College London
Legal Services, 6th Floor
1-19 Torrington Place
London
WC1E 7HB

Email: data-protection@ucl.ac.uk

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Congenital Hypothyroidism: Prevalence and Risk Factors

What is this Privacy Notice about?

This privacy notice outlines the purpose of the research and explains how we will use data for this study. It also describes how to get further information and how to contact the study team if you have queries about how data are being used for this research.

Who are we?

We are researchers at University College London (UCL) Great Ormond Street Institute of Child Health. UCL and Great Ormond Street Hospital are joint data controllers for this project.

What is congenital hypothyroidism?

Hypothyroidism is the name given to the condition resulting from an underactive thyroid gland; this means that the thyroid is not producing enough thyroid hormone for the body’s healthy growth and development. Children who are born with congenital hypothyroidism are born without a thyroid gland, a thyroid gland that has not developed properly, or is in the wrong position, or a thyroid gland that is not producing enough thyroid hormones. Without early detection and treatment, congenital hypothyroidism can result in severe learning disability.

Why are we doing this project?

All children in the UK are offered screening for several rare conditions at five days of age. One of these conditions is congenital hypothyroidism. Since the introduction of newborn screening for congenital hypothyroidism 40 years ago, there has been an increase in the proportion of babies born with this condition, particularly a type called congenital hypothyroidism with gland in situ (CH-GIS). We do not know why CH-GIS is becoming more common, or how it affects health, development and learning as children grow up. We want to know why more babies are being diagnosed with CH-GIS, and what health and development is like for children living with this condition.

The data used in this project

This study will include data from babies born in the North Thames region (including North London, Bedfordshire, Hertfordshire, and Essex) and whose newborn screening blood spot samples were tested at the Great Ormond Street Hospital (GOSH) newborn screening laboratory between January 2000 and December 2020.

The following data sources will be used to create the study dataset:

North Thames Newborn Screening Database. This database contains demographic data and screening test results.
GOSH Congenital Hypothyroidism Database. This dataset contains information on 1800 children who have screened positive for congenital hypothyroidism through the North Thames newborn screening programme since 2006. The database also contains genetic data for ~50 children with congenital hypothyroidism.
Hospital Episode Statistics (HES). HES contains data on all admissions to NHS hospitals, Accident and Emergency (A&E) attendances and outpatient bookings.
Births and Death registration data from the Office of National Statistics (ONS).
Department for Education (DfE) National Pupil Database (NPD). This database holds data on demographics, phonics and key stage results, and special educational needs provision for all children in state primary and secondary schools; 93% of all school children in England.
NHS Business Service Authority (NHSBSA) community dispensing data, which contains data on medicines dispensed in community (non-hospital) pharmacies.

The study dataset will be de-personalised, meaning researchers analysing the dataset will not be able to see identifying information such as NHS numbers, names, or addresses.

How we will use these datasets

These datasets will be securely linked by the Digital Research Environment (DRE) at Great Ormond Street Hospital, and NHS England, to create health and education histories for children with congenital hypothyroidism, and unaffected children. We (UCL) will then analyse the data to determine 1) why the prevalence of CH-GIS has increased, and 2) what health and development outcomes are like for children with congenital hypothyroidism compared to other children. The outcomes we will look at include hospital admissions, school results and special educational needs provision. We will use statistical techniques that allow us to take other factors including socio-economic status, or child underlying conditions into account. Note that data linkage and analyses will be carried out without the explicit consent of the children in the cohort, or their parents. However, researchers will not have access to personal information such as NHS numbers, names, or full addresses. We will also take a number of steps to ensure patient confidentiality.

What information will we collect about you (or your child) for the study?

Our study uses the linked, de-personalised data that is collected from hospitals and schools in England. There will be no further recruitment of participants nor new collection of data.

Where to find the results

Data Storage and data Retention

The final linked data set will be securely stored in UCL's Data Safe Haven. The linked education data will be stored in the ONS Safe Researcher Service. The Data Safe Haven and the ONS Safe Researcher Service are secure servers that have been certified to the ISO27001 information security standard and conforms to NHS England's Data Security and Protection Toolkit, meaning they meet stringent security requirements for holding sensitive clinical data.

No personal data will leave the UCL Data Safe Haven or ONS Safe Research Service and data will not be sent/accessed outside of the UK. All staff working on this project have a legal duty of confidentiality to protect personal information about mothers and children. All staff working with the data have had special training in keeping data confidential and secure. All identifying variables, (e.g., NHS numbers, names, and postcodes) will be held separately to the clinical and demographic data at all times. Researchers will not be able to access identifying variables and those linking the databases together will not be able to access the linked clinical, socio-demographic or education data. The GOSH Digital Research Environment (DRE) team will securely store the mother and baby NHS numbers, baby date of birth, postcodes until the end of the study (31st October 2024). This is to allow us to set up information governance procedures for using the cohort data for other research studies. Note that any other studies using the linked data will need to go through rigorous ethical and information governance reviews.

Different parts of the data may be subject to different retention periods as agreed with the different data providers (DfE, ONS, GOSH and NHS England). These retention periods are still being negotiated but are expected to be until at least 2026. Retention of data during this period is necessary to ensure that analyses can be checked and to adhere to guidelines on reproducibility of research. Identifying variables will be kept (separately from the research data) until the end of the study, in 2024.

What is the lawful basis for using this information?

The legal basis for processing personal data for this purpose at UCL falls under Article 6(1)(e) of the General Data Protection Regulations (GDPR), i.e., the “public task” of healthcare research. 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”.

Personal identifying information (including names, addresses, dates of birth and NHS numbers) will be processed by GOSH DRE and NHS England in order to link the data. They will not be used for analyses

The study was approved by the London - Queen Square Research Ethics Committee (reference 20/LO/1216), the Health Research Authority following review by the Confidentiality Advisory Group (reference 21/CAG/0071).

Your rights

Records held for this research study are de-personalised: researchers are not able to identify which records may belong to you. As a consequence, it is not possible for researchers themselves to grant usual data protection rights, nor is automated decision making (including profiling) applicable.

How do I contact the Research team (or Data Controller)?
If you would like to know more about the project and how we use your data, please contact the principal investigator, Dr Pia Hardelid via email, or by phone or post, via the UCL Great Ormond Street Institute of Child Health:
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH

Telephone: 020 7242 9789/020 7905 2000
Email: p.hardelid@ucl.ac.uk

What if I do not want my data (or child’s data) to be used in this study?

You are entitled to object to your data, or your child’s data (if you are their legal guardian), being used for this research. The UCL research team will not be able to identify you and cannot remove your records from the study directly at your request.

However, if you do not wish your, or your child’s, data to be used for this study, please contact us, using the contact details above. We will need to obtain some details about you or your child, which we will provide to a member of the DRE Team at Great Ormond St Hospital who may be able to remove you or your child’s record from the study from the point at which you contact us.

Further, you have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection’ or patient ‘opt-out’. Please visit the NHS's website for further details: https://digital.nhs.uk/your-data. Your choice will not affect the health care or the educational resources you receive.

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

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Creating longitudinal datasets for linked administrative data research using synthetic data

The study aims to evaluate methods for creating ‘synthetic’ datasets for health research. The idea is to create artificial datasets that look like the original data source (preserving the structure and statistical properties of the data and relationships between variables) but that do not contain information on any real individuals, and therefore pose no confidentiality risks. If such datasets can be created, synthetic data could be used by researchers to understand the structure of the data, develop data cleaning protocols, codes and algorithms, and test out methods. The study is led by Katie Harron of the UCL Great Ormond Street Institute of Child Health (see below for contact details) and is funded by Administrative Data Research UK.

1.1 What is this Privacy Notice about?

1.2 What is this study about?

Administrative data hold great potential for informing public policy. However, this potential is not yet being realised due to restrictions around access and linkage, and the need to preserve data confidentiality. Governance procedures and approvals lead to long timescales and tight restrictions on data access, which can jeopardise publicly funded research.

One solution is to generate synthetic data that preserve the statistical properties of the original sources, but that do not correspond to any real individuals and do not pose any privacy risks. These data could be widely shared, allowing researchers to understand the structure of the data sources, develop analysis plans and algorithms, and test out different models. This could be done in parallel to applying for access to linked administrative datasets, streamlining the research process. Final refinements and analyses would be conducted on the real data.

Our study will test the feasibility of using a range of approaches for creating synthetic linked administrative datasets. We will evaluate these approaches using the exemplar of linking the third National Survey of Sexual Attitudes and Lifestyles 3 (Natsal 3) to two administrative datasets: Hospital Episode Statistics (HES) and the National Pupil Database (NPD). Linkage between Natsal 3, HES and NPD will provide a unique opportunity to gain a deeper understanding of the social, behavioural and biological aspects of sexual health, and to generate evidence to inform implementation and monitoring of sexual health interventions. Based on our findings, we will generate guidelines on the appropriate use of synthetic data.

1.3 What is the lawful basis for using this information?

‘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.’

For special category data, the lawful basis for using the information is ‘Archiving, research and statistics’ in Article 9(2)(j) of the General Data Protection Regulation, which states:

Legislation within section 537A of the Education Act 1996 covers the sharing of pupil data from schools, as defined at section 537A(1) and section 537A(9) of the act. The law which governs the sharing of pupil data with named bodies and third parties is the Education (Individual Pupil Information) (Prescribed persons) (England) Regulations 2009.

1.4 What information will we collect about you for the study?

Our study uses the de-identified data that have already been collected from three sources:

Survey data from the third National Survey of Sexual Attitudes and Lifestyles (Natsal 3)
Routinely collected hospital records for patients attending NHS hospitals in England between 1 April 1997 and 31 March 1998 or 1 April 2019 and 31 March 2020, from Hospital Episode Statistics
Routinely collected education data for pupils attending schools in England from September 2005 onwards, from the National Pupil Database.

The research team will not have access to personal information that could identify individuals. Personal identifiers (such as name and postcode) have been removed before transfer of any data to the researchers. The researchers cannot identify individuals under any circumstances.

1.5 How will the information be used?

The hospital and education data requested will achieve the aim of this study by providing ‘original’ data sources that can be used as a basis for evaluating a range of synthetic data generators. For example, the UCL team will select a core set of variables from the education data to be synthesized, such as age, examination results, and number of absences.

Exploring whether it is possible to accurately generate ‘lookalike’ variables in a synthetic dataset will help inform researchers and data providers on the value of synthetic data. Information from the administrative data will also allow the researchers to determine for which types of data the methods are effective.

Findings from the study will help data providers decide whether providing synthetic versions of electronic health data could help address the increasing pressure to deliver timely outputs in the context of increasing numbers (and complexity) of data access applications. Sensitive or potentially identifiable datasets have great potential for economic and social impact, leading to better informed policy decisions and effective public services. Widening the use of these data through synthetic data would therefore lead to increased efficiency in health research, ultimately benefiting the public.

1.6 Where will the data be stored?

The linked health and education data will only be accessible in UCL’s Data Safe Haven. The data will be held for three years. It will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.7 Your rights

However, the government department providing access to the health records (‘NHS England’) is able to uphold some of your rights, such as your right to request access to your data, rectify your data, or restrict the processing of your data.

For more information on your rights, please consult the NHS’s transparency notice using this link.

1.8 Access to your information in the study

It will not be possible to access your study data from the University research team because all the personal information will removed: it will not be possible for UCL researchers to identify you under any circumstances.

Your rights in general regarding your data, which includes the right to access any personal information held about you, as well as the rights to rectification, erasure, restriction and the right not to be subject to automated decision-making, are found in the Data Protection Act 2018.

1.9 What if I do not want my data to be used in this study?

The UCL research team will not be able to identify you and cannot remove your records from the study directly at your request. You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection.’ Please visit the NHS's website for further details: https://digital.nhs.uk/your-data.

Your choice will not affect the health care or the educational resources you receive.

1.10 How do I contact the Research team (or Data Controller)?

If you have questions or concerns about the study please contact Dr Katie Harron, who is also the data controller for this research:

Dr Katie Harron
Associate Professor
UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH
Email: k.harron@ucl.ac.uk
Telephone: 020 7905 2220

Right to complain to the Information Commissioner’s Office
You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights

Head or Heart Study - A dormant trial linkage feasibility study

1.1 What is this Privacy Notice about?

This privacy policy outlines the purpose of the research and explains how we collect and use data for this study. It also describes how to get further information and what to do if you (or your child) do not want to be part of the study.

1.2 What is this study about?

Infant formula is consumed globally by over 60% of infants aged less than six months. Unlike other early interventions to support cognitive development, modifications to infant formula are highly scalable. They are reviewed and regulated centrally, resulting in the potential to affect a large group of infants worldwide. Previous research mainly focused on immediate cognitive impacts of formula modifications. But this isn’t necessarily the main concern for parents and policy makers as early measures are often unreliable. To more fully address their cognitive impact, we need to follow children to older ages to see whether there are long-term cognitive effects. This adds to the difficulty of running randomised trials since longer-term follow-up is both difficult and expensive. The few trials that attempted long-term follow-up had low response rates which makes their results hard to interpret. In addition, as modifications had begun to establish themselves in clinical practice, it was challenging to conduct new trials with control formulas that did not include the modifications.

1.3 What is the lawful basis and ethical permissions for using this information?

‘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.’

For special category data, the lawful basis for using the information is ‘Archiving, research and statistics’ in Article 9(2)(j) of the General Data Protection Regulation, which states:

Data linkage requires the use of identifiers, which constitute personal and confidential data. To use these identifiers without consent, exemption from section 251 NHS Act 2006 is approved by the Health Research Authority Confidentiality Advisory Group (CAG) 17CAG0051.

Research Ethics approval was granted by the London City & East Research Ethics Committee / HRA and Health and Care Research Wales (HCRW): REC 17/LO/0556 and the Joint Research and Development Office Great Ormond Street Hospital for Children NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health: 14PE15 / 17PE08.

1.4 What information is collected about you (or your child) for the study?

The study uses information collected from 11 randomised control trials of infant feeding with over 4,000 participants recruited between 1982 and 2001. The data for the dormant trials is provided by the UCL GOS ICH Nutrition Group. Clinical data (without any identifier data).

Trials data are linked to follow-up data from de-identified administrative education data collected from schools in England and collated by the Department for Education (in a database called the National Pupil Database).

Identifier data and linkage was performed by a Trusted Third Party, the Fischer Family Trust, a non-profit organisation that creates bespoke NPD extracts and analyses for English schools and holds NPD data with permission from the Department for Education (this study’s DfE Data Sharing Approval and Agreement ref: DR170712).

De-identified children’s education NPD data is for a specified list of children for the academic years 1995/1996 (or earliest available after 1996) for approximately 3,500 pupils.

These data include the following personal data:

Clinical trials data
Educational data such as school enrolments, special educational needs provision, absence and exam attainment. Further details of data the Department for Education collects can be found here.

The following sensitive personal data were processed and then destroyed by the Trusted Third Party, with all sensitive personal data separated from research data at all times:

Names
Address
Date of birth

1.5 How is the information be used?

The aim of this study is to firstly demonstrate the research potential of unconsented linkage between “dormant” (historical) trial data and administrative records for understanding long-term intervention effects; and secondly, through doing this the long-term safety and effects of giving nutritional supplementation in infancy on cognitive development is evaluated.

Automated decision-making, including profiling, is not used in this study.

Data will not be used for marketing purposes, shared with or transferred to any third parties or other countries.

1.6 Where and how long will the data be stored?

Deidentified trials and NPD data are stored on a secure server at University College London. University College London is a registered data processor under the terms of the Data Protection Act 2018 (ICO Data Protection Registration: Z6364106. See, Information Commissioners Office www.ico.gov.uk).

The research team have permission to keep the NPD education data until May 2023.

1.7 Your rights for your (or your child’s) information in the study?

Linked records held for this research programme are deidentified and pseudonymised. Researchers working with the linked data will not be able to see your name or other identifying information about you. Researchers are not able to identify which records may belong to you.

If you have been part of one of the original studies, you are free to withdraw from the study without giving any reason. If you want to withdraw from the linkage full or in part (e.g., withdraw only from linkage to health but not from education records) you can contact us: r.gilbert@ucl.ac.uk. Please note that it is not possible for us to stop using your information if it is already being used in ongoing analyses. However, no new analyses will be started using your data. Similarly, if you have been part of one of the original studies you have the right to access, rectify, or restrict the processing of your data in this study. You can contact us: r.gilbert@ucl.ac.uk.

The government department providing access to the education data (‘Department for Education’) is also able to uphold some of your rights, such as your right to request access to your data. For more information on your rights, please consult the Department for Education’s privacy notice using this link.

1.8 How do I contact the Research team (or Data Controller)?

If you have questions or concerns about the study please contact Professor Ruth Gilbert, who is also the data controller for this research:

Prof Ruth Gilbert
Professor of Clinical Epidemiology
W5.05 UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London
WC1N 1EH
Email: r.gilbert@ucl.ac.uk
Telephone: 020 7905 2101

You may also contact the UCL Data Protection Officer:
Data Protection Officer
University College London
Legal Services, 6th Floor
1-19 Torrington Place
London
WC1E 7HB

Email: data-protection@ucl.ac.uk

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

A mixed-methods study to evaluate which health visiting models in England are most promising for mitigating the harms of adverse childhood experiences

This research is part of the Population Policy and Practice programme, at the University College London (UCL) Great Ormond Street Institute of Child Health (ICH), in collaboration with the University of Oxford, Oxford Brookes university, Kent County Council, National Institute for Health Protection, Department of Health and Social Care, ActEarly (Care City and Born in Bradford) and East Sussex County Council, and the National Children’s Services Performance and Data Management Group. It uses information collected from administrative sources to conduct research in order to understand how health visiting services are provided across local authorities in England and which health visiting models are most promising for mitigating the harms of maternal adverse childhood experiences. It is led by Prof Katie Harron and Dr Jenny Woodman and funded by National Institute for Health Research.

1. What is this privacy notice about?

This privacy notice outlines the purpose of the research and explains how we will collect and use the data for this study. It also describes how to get further information and what to do if you (or your child) do not want to be part of the study. You have the right to access any personal information held about you, to have your information processed fairly and lawfully and the right to privacy. These rights are upheld by law and outlined in the Data Protection Act 1998.

2. What is this study about?

This is a mixed-method study. We are using Community Service Data Set, Hospital Episode Statistics, aggregate local authority-level context data, in-depth case studies, and a national survey to develop a topology of health visiting service delivery across local authorities in England and evaluate which models of health visiting are most promising for mitigating the impact of maternal adverse childhood experiences on child and maternal outcomes. This study aims to help identify the best way of balancing health visiting for all families with health visiting that targets supports to those most in need, and help understand how health visiting changes the lives of the children and parents and especially those children living with adverse experiences.

3. What is the lawful basis for using this information?

The lawful basis for using information collected routinely for administrative purposes for research is the ‘public task’. This is part of the University’s commitment to ‘integrate research and innovation for the long-term benefit of humanity’. The public task basis may be found in Article 6(1)(e) of the General Data Protection Regulation, which states: “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 processing also falls under Article 9(2)(j), which states: “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.

4. What information will we collect about you (or your child) for the study?

We will use health visiting services data in Community Service Data Set between 2016 and 2020 and Hospital Episode Statistics data for mothers and babies that are collected by the National Health Service for births between 2013 and 2020. The two datasets are made available by NHS England. We will also use other publicly available aggregate data.

Community Service Data Set include information on socio-demographic characteristics, breastfeeding and nutrition, care event and screening activity, diagnoses including long-term conditions and disabilities, and scored assessments. Detailed list of information collected in the Community Service Data Set can be found here.

Hospital Episode Statistics include clinical/management information such as the type of hospital admission (planned/unplanned), speciality of treatment, length of time spent in hospital, the reason of hospital admission (diagnosis), and geographic information such as hospital and local authority. Detailed list of information available in Hospital Episode Statistics can be found here.

All individual-level data will be de-identified before it is transferred to the research team. This means that personal identifiers will be removed. Date of birth was removed from the Community Service Data Set before transferred to the research team. Date of birth in Hospital Episode Statistics was estimated as the earliest episode date from birth admission. This will be used to assess the eligibility of children to health visiting services. Once these variables have been derived, date of birth will be deleted from the data. We will also use date of death, as mortality is an important outcome measure of this study. We will link the mother and babies within Hospital Episode Statistics to determine the exposure status (i.e., maternal adverse childhood experiences) of study population. We will also link the Community Service Data Set and Hospital Episode Statistics to capture the association between uptake of health visiting services and the health outcomes. It will not be possible to identify any individual within the data.

We will also do online surveys on health visiting staff to collect information on the workforce, health visiting service delivery, budge, and costing. No individual-level data will be collected in the surveys.

5. How will the information be used?

The Community Service Data Set, Hospital Episode Statistics, Health Visitor Service Delivery Metrics, and publicly available aggregate data will be used by study in the following ways:

1) To assess the completeness of Community Service Data Set, we will aggregate the individual-level health visiting service data to local authority level and link to and compare with the Health Visitor Service Delivery Metrics published by the Office for Health Improvement and Disparities. We will then select a subset of local authorities where the health visiting service data are complete for the study project, called research ready datasets.

2) To develop a typology of health service delivery in England, within the research ready datasets, we will calculate local-authority-level variables on the coverage, type and intensity of health visiting service delivery based on the individual-level Community Service Data Set. We will then conduct latent class analyses based on these local-authority-level variables and the information we obtain from the online survey on health service delivery. These will group local authorities that deliver similar coverage, type and intensity of health visiting service and give a typology of health visiting service delivery models.

3) To understand what types of local authority deliver which model of health visiting service, we will describe the local authority context characteristics, including deprivation, rural urban classification, ethnicity, and family homelessness, for each health visiting service delivery model. This also helps to check the sensibility of the typology.

4) To determine the exposure status to maternal adverse childhood experiences, we will link the mother and the baby within Hospital Episode Statistics. We will flag mothers with admissions related to mental health conditions, substance misuse or violence in the 2 years prior to births and the baby these mothers gave birth to would be considered as exposed to maternal adverse childhood experiences. Different typologies will be developed for each population.

5) To evaluate the impact of different models of health visiting service delivery on child and maternal outcomes for families with and without maternal adverse childhood experiences, we will again link the Community Service Data Set and Hospital Episode Statistics. One of the child outcomes is child development measured through the Ages & Stages questionnaire at 2-2.5 years in the health visiting review, data for which are captured in the Community Service Data Set. Child outcomes also include unplanned hospital admissions for injuries and mortality and unplanned, maltreatment related admissions up to age 5, information on which comes from Hospital Episode Statistics. Maternal outcomes, which also from Hospital Episode Statistics, include hospital admissions for mental health conditions, substance misuse, and violence up to 5 years after birth.

6. Where will the data be stored?

All study data will be transferred to the University research team in an encrypted form (‘scrambled’), where it will be securely stored in the UCL Data Safe Haven. The UCL Data Safe Health is a registered data processor under the terms of the Data Protection Act 1998 (Information Commissioner's Office Data Protection Registration: Z6364106).

The data will not be used for marketing purposes, shared with or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

7. Your rights

For more information on your rights, please consult the NHS's transparency notice as the link below: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register

8. Access to your information in the study?

It will not be possible to access your study data from the University research team data because all the personal information will be removed. You however have the right to access any personal information held about you, to have your information processed fairly and lawfully and the right to privacy. These rights are upheld by law and outlined in the Data Protection Act 1998.

9. What if I do not want my data to be used in this study?

The UCL research team will not be able to identify you and cannot remove your records from the study directly at your request. You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection’ and ‘opting out’. Please visit NHS’s website for further details of how the NHS uses your information and opt out: https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/.

Your choice will not affect the health care you receive.

10. How do I contact the research team (or data controller)?

If you have questions or concerns about the study, please contact Dr Jenny Woodman:
Dr Jenny Woodman
IOE - Social Research Institute, UCL Institute of Education
London. WC1H 0AA
Email: j.woodman@ucl.ac.uk
Telephone: 02076126815

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

Additional information/links:
Information Commissioner’s Office: www.ico.org.uk
Community Service Data Set: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/community-services-data-set
Hospital Episode Statistics: http://content.digital.nhs.uk/hes
UCL Data Safe Haven: http://www.ucl.ac.uk/isd/itforslms/services/handling-sens-data/tech-soln

Health and educational outcomes for children affected by domestic abuse: insights from linked data

1.1 What is this Privacy Notice about?

1.2 What is this study about?

The primary aim of this study is to assess how provided services impact the education and health of children who have experienced domestic abuse. The secondary aim of the study is to evaluate the effect of domestic abuse on health and educational outcomes in children. In order to do so, we use the information from service providers as well as routinely collected administrative data from hospitals, schools, and social care organisations (ECHILD data).

1.3 What is the lawful basis for using this information?

The lawful basis for using information collected routinely for administrative purposes for research is the ‘public task.’ This is part of the University’s commitment to ‘integrate education, research, innovation, and enterprise for the long-term benefit of humanity.’ The public task basis may be found in Article 6(1)(e) of the General Data Protection Regulation, which states: ‘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 using the data collected from the intervention participants is their informed consent.

1.4 What information will we collect about you (or your child) for the study?

Our study relies on two main sources of data.

Firstly, we use the data collected during the administration of specialised interventions for children affected by domestic abuse. The data includes questionnaires filled out by participants (if you participate in the programme, then it is you or your child) and by the staff. Study participants enrolled in specialised serviced programmes who have a child aged 4-7 years are asked to complete short questionnaires on their child’s behalf. The questionnaire contains questions about the child’s emotional well-being, family life, and feelings of safety. Children aged 8 or older are asked to complete their own questionnaire, addressing their feelings, experiences with the service, family life, and their sense of safety. We gather and anonymise the responses from these questionnaires.
Secondly, we use de-identified data from hospitals (see Health Records below), schools (see Educational records below), and social care services (see Social care records below) in England. Hospital data covers dates and reasons for the admissions of a child to emergency care. School data includes performance and attendance. Social care information includes details such as the dates and reasons for referrals to assessments, the outcomes of these assessments, as well as information about placements and respite care use. These data are linked together in a data resource called ECHILD.

Study participants who are enrolled in specialised service programmes for children affected by domestic abuse and who have consented to data linkage will have their questionnaires and routinely collected data linked together. We also use routinely collected data from the sources outlines above for children who are not enrolled in the specialised service programmes. We will use these data to compare health and education outcomes in children with and without indicators of domestic abuse. To ensure a comprehensive evaluation that considers variations across local authorities, we analyse data from all of England. This approach ensures that our findings can be applied to diverse local contexts.
Our research team will not have access to personal information that could identify you or your child. Personal identifiers like names and postcodes have been removed before the data are transferred to our researchers. Data has been linked using personal identifiers from hospital and education records by NHS Digital, but the researchers cannot identify individuals under any circumstances.
We have put in place safeguards to ensure that our study publications cannot identify individuals, whether through conferences or other printed media, such as journals. These safeguards also ensure that no one, whether a private individual or someone conducting official duties, can identify your individual data.

Additional data sources for our study include

Health records

Admitted Patient Care (APC). The dataset includes geographical information like the hospital and local authority, the nature of hospital admissions (planned/unplanned), treatment specialty, length of hospital stay, and the reason for hospital admission (diagnosis). You can find a detailed list of information available in Hospital Episode Statistics: APC [here].
Emergency Care Dataset (ECDS). The dataset includes the information about emergency department attendances and corresponding diagnoses. You can find more information about ECDS [here]
HES-ONS Linked Mortality Data. The dataset includes date and cause of death registered in England and Wales. You can find more information about HES-ONS linked Mortality data [here].
Mental Health Services Data Set (MHSDS). The dataset includes dates and type of mental health service referrals. You can find more information about MHSDS [here].

Educational Records

School Census Pupil Level (for each year of school attendance). The dataset covers school enrolment, special educational needs, free school meals, and the Income Deprivation Affecting Children Index (IDACI). You can find more information about School Census data [here].
EYSF, KS1, KS2, and KS4 Educational Outcomes Datasets. The dataset includes data on educational attainment corresponding to the respective stages. You can find more information about education attainment data [here].
Absences. The dataset includes records both authorised and unauthorised absences, along with the reasons for them. You can find more information about Absences dataset [here].

Social care records

Children Looked After Return (CLA). The dataset includes date and type of placement under local authority’s care. You can find more information about CLA [here].
Children in Need Census (CIN). The dataset includes referrals to social care services, the results of needs assessment. You can find more information about CIN [here].

1.5 How will the information be used?

The intervention data will be utilised to explore impact on outcomes. The study will make use of linked health and education data for school children in the following ways:

To determine whether enrolment in the specialised service has an impact on the health and education outcomes of children affected by domestic abuse.
To evaluate the effect of exposure to domestic abuse on the health and educational outcomes of children.

Statistical methods will be employed to identify patterns in the data and potential associations between domestic abuse and school achievement, school absences, and the utilisation of hospital services.
The study's findings could serve to inform policymakers and care providers about the most effective interventions for children affected by domestic abuse. Ultimately, this information will be used to enhance the health and well-being of children, mitigate the potential effects of trauma, and improve their socialisation.
It should be noted that automated decision-making, including profiling, is not employed in this study.

1.6 Where will the data be stored?

The questionnaires collected from the participants enrolled in the specialised programs are securely stored on their servers and on the web-poll service providers’ servers (e.g., Qualtrics). These data are then transferred to the government department (NHS England) and linked with routinely collected administrative data (health records, education records, and social care records). Subsequently, the data are anonymised and securely transferred to the Office for National Statistics Secure Research Service (ONS SRS), where they will be accessed by the research team. The routinely collected data from children not enrolled in the specialised programs will also be anonymised and securely transferred to the ONS SRS.
The research team has permission to retain the data for 5 years (until April 2028). It will not be used for marketing purposes, shared with, or transferred to any third parties. The data provided to the team for research will not be transferred to other countries.

1.7 Your rights
Records held for this research program are pseudonymised; researchers are not able to identify which records may belong to you. As a consequence, it is not possible for researchers themselves to grant the usual data protection rights, nor is automated decision-making (including profiling) applicable.
However, the government department providing access to the records (NHS England) is able to uphold some of your rights, such as your right to request access to your data, rectify your data, or restrict the processing of your data. You can withdraw from the study at any point, preventing any further data collection about you or your child (see section 1.9 below)
For more information on your rights, please consult NHS Digital’s transparency notice as the link below: [https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-s...

1.8 Access to your (or your child’s) information in the study

If you are enrolled in a specialised program for children affected by domestic abuse, you can request access to research data generated by the service provider by contacting their representative.
It will not be possible to access any other study data from the University research team because all personal information will be removed. However, you have the right to access any personal information held about you, to have your information processed fairly and lawfully, and the right to privacy. These rights are upheld by law and outlined in the Data Protection Act 1998.

1.9 What if I do not want my data (or child’s data) to be used in this study?

If you are enrolled in a specialised programme for children affected by domestic abuse, you can refuse to consent to use your data for research purposes or revoke previously given consent at any point during your participation in the programme. Any new data collection and transfer will stop after your request. If you want to withdraw from the linkage of CADA study data you can let the evaluation team know before April 2024 by emailing cadaevaluation@uclan.ac.uk. After this date, you can withdraw from ‘future’ data linkage by sending an email to the UCLan study team cadaevaluation@uclan.ac.uk. UCLan will notify NHS England that no further data for your child should be shared with the ECHILD team (by sending their name, postcode and date of birth to NHS England). It will mean that UCLan study team will still retain the access to any linked data collected before your withdrawal, but the team will not be able to obtain any new data.
You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection’ and ‘opting out.’ Opting out will not affect the health care or the educational resources you receive.

Kids’ Environment and Health Cohort

This privacy notice describes what the Kids’ Environment and Health Cohort is, what data are held in the cohort, and how the cohort is set up. It also describes how to get further information about this project, and what to do if you do not want your data to be included as part of the Kids’ Environment and Health Cohort.

1 - Who we are

We are a team of researchers from University College London (UCL). UCL is the data controller for the database created in this project. We (UCL) are also working with the London School of Hygiene and Tropical Medicine, London School of Economics and Political Science, City, University of London, and Brock University (via one of the project co-investigators, Dr Samantha Hajna). Note that no data will leave the UK at any point, and researchers can only access the data from locations in the UK.

2 - Why are we doing this project?

Children are much more vulnerable to harmful substances in and around their homes and schools than adults. Many children in England also lack access to services and infrastructure where they live and go to school. Living in areas with high outdoor air pollution or near to fast food shops and having no access to green space during childhood is associated with the development of long-term conditions such as asthma, mental health problems and obesity. In this project, we are setting up a new research database, the Kids’ Environment and Health Cohort, to allow research into how the local environment influences health and education in children, and to help understand whether environmental policies introduced by national or local government are improving children’s lives in England.

3 - What are we doing?

The Kids’ Environment and Health Cohort: a national birth cohort containing de-identified data from all children born in England from 2006 onwards – around 11 million children by 2023. We expect the cohort to be updated annually.

The Cohort will hold routinely collected, linked data from vital statistics (births and deaths) registration and census, health, and education records from children from birth until adolescence. Children’s records will be linked to their mothers’ health record up to a year before birth to allow researchers to take into account environmental exposures and maternal health during pregnancy. It will be possible to link environmental data to the children’s home and school locations via NHS address records and school records. This will be done in a secure way (see below) which protects children’s identities and home and school addresses.

The Kids’ Environment and Health Cohort will be held in the will be held by the Office for National Statistics (ONS) in a Trusted Research Environment. You can read about Trusted Research Environments here: https://www.hdruk.ac.uk/access-to-health-data/trusted-research-environments/

4 - The data used in this project

The Kids’ Environment and Health Cohort will hold linked data from the following datasets:

ONS birth and death registration data
Census 2011 and 2021 data (for children born within two years of each Census)
Hospital Episode Statistics, which contains data on hospital contacts
Maternity Services Data, which holds data on maternal health during pregnancy
Mental Health Dataset, which holds information on referrals to mental health services
Community Dispensing Data, which holds information on dispensed medicines, including for asthma
National Pupil Database, which holds data on all children in state school, including special educational needs provision and exam results. It also includes information on children attending early years settings if they receive any free hours entitlement.
Personal Demographic Service (NHS address records) and school address data provided by the Department for Education. These will be to link data on the local environment to children’s data. Addresses will be encrypted for this linkage to take place; researchers will never see the full addresses.

A number of environmental datasets about small areas across England, including on air pollution, energy efficiency of buildings, and proximity to major roads, will be linked to the de-identified health and education data as part of setting up the Cohort.

Once the Kids’ Environment and Health Cohort is set up, researchers may apply to UCL (the data controller) to link in further small-area level environmental dataset via children’s home addresses or school addresses). Researchers will need to meet a number of strict criteria in order to do this, to ensure confidentiality at all times.

5 - Confidentiality

All data are kept on highly secure servers at the Office for National Statistics.

Researchers will not be able to access identifying variables such as names, NHS numbers or dates of birth.

The data on children’s home or school addresses will be kept separately to the health and education data. Researchers will not be able to access the address records – these can only be accessed by a small number of staff at ONS. If researchers would like to link further environmental data into the cohort, addresses will be encrypted by ONS staff for this linkage to take place; researchers will never see the full addresses.

Access to the cohort will only be granted to researchers who a) have received ethical approval for their project, b) have demonstrated that their project will support children’s health and education via improvements in living environments, c) protect children’s and mothers’ confidentiality at all times, and d) have received training in how to analyse sensitive datasets safely.

6 - Patient Notification/Fair Processing Notice

The various vital statistics, health, census and education data will be linked together using identifying information about mothers and children. This will be done by staff at ONS and NHS England. ONS will link birth registration data for the children to death data and their mothers’ 2011 and 2021 Census records.

ONS will securely transfer mother and child identifying information (including NHS numbers and dates of birth) to NHS England, who will link the mothers and children to their address histories, health data, and children’s pupil reference numbers in education data. The address histories and pupil reference numbers, and the linked health data will be transferred back to ONS. ONS will transfer the pupil reference numbers to the Department for Education who will extract the education records for the children in the cohort and transfer these back to ONS.

The health data, Census data, education and vital registration data will be de-identified (that is, all identifying information, such as names, dates of birth and NHS numbers, will be removed), before the datasets are placed in the ONS Trusted Research Environment (called the Secure Research Service). Researchers will access the Kids’ Environment and Health Cohort data for their projects via the ONS Secure Research Service.

A smaller number of environmental datasets, including on air pollution and distance to roads, will also be linked to the cohort by ONS staff via the ONS address records as part of setting up the cohort. Researchers will not access these address records.

All researchers working with the data need special training in keeping data confidential and secure. The ONS and NHS England also adheres to strict levels of training and confidentiality awareness for its staff.

7 - Where to find the results

Results from studies using Kids’ Environment and Health Cohort data will be published in open access journals so that they can be read online and downloaded for free. We will announce these publications and provide lay summaries for each research project using data of our results on our website: https://kenvh-cohort.org.uk/.

8 - Legal and ethical permissions

There are a number of legal bases for processing the data in the Kids’ Environment and Health Cohort.

Under the General Data Protection Regulations (GDPR), the legal basis for processing personal data for Kids’ Environment and Health Cohort fall under Article 6(1)(e), “a task carried out in the public interest”, and Article 9(2)(j), “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.

Personally identifying information (including names, addresses, dates of birth and NHS numbers) will be processed by NHS England and the Office for National Statistics in order to link the data. For any data linked by NHS England, this is conducted under section 251 of the National Health Services Act (2006) and its Regulations, the Health Service (Control of Patient Information) Regulations (2002). The application was reviewed by the Confidentiality Advisory Group (CAG). CAG is an independent group of lay people and professionals which provides expert advice on the use of confidential patient information without consent. CAG recommended that our application should be supported and the Secretary of State for Health and Social Care approved this.

The legal basis for linkage between vital statistics data and education data, and resharing of data for the Kids’ Environment and Health Cohort will be the Digital Economy Act 2017.

9 - Data storage and retention

We currently have funding to set up the Kids’ Environment and Health Cohort; this lasts until December 2025. The retention period for each constituent dataset in the Kids’ Environment and Health Cohort will differ according to the organisation providing data, but we anticipate that the data approvals will be renewed on a continuing basis.

Each project using data from the Kids’ Environment and Health data will have to specify the amount of time they require to finish their study. Once the project is finished, the project specific data will be archived for 2 years.

10 - Your options

If you would like to know more about the project and how we are using your data, please have a look around our website https://kenvh-cohort.org.uk/, or contact us at: kenvh-cohort@ucl.ac.uk. You may also contact the principal investigator, Dr Pia Hardelid, post or email, via the UCL Great Ormond Street Institute of Child Health:

Dr Pia Hardelid
UCL GOS Institute of Child Health
30 Guilford Street
London WC1N 1EN
p.hardelid@ucl.ac.uk

Data Protection Officer
University College London
Legal Services, 6th Floor
1-19 Torrington Place
London
WC1E 7HB
data-protection@ucl.ac.uk

You also have the right to complain directly to the Information Commissioner’s Office, which is an independent regulatory authority set up to uphold information rights.

11 - Further information

This research is led by Dr Pia Hardelid at University College London (UCL). It is supported by funding from the Economic and Social Research Council via Administrative Data Research-UK, with additional funding from Health Data Research UK.

University College London is acting as Data Controller for the Kids’ Environment and Health Cohort. You can find further information about how UCL handles data here: https://www.ucl.ac.uk/legal-services/privacy/general-privacy-policy

If you have questions or concerns about the study please contact Dr Pia Hardelid: p.hardelid@ucl.ac.uk, or

Dr Pia Hardelid
UCL GOS Institute of Child Health
30 Guilford Street
London WC1N 1EN

Privacy Notices

1. What is this Privacy Notice about?

2. What information do we collect about you (or your child) for ECHILD?

3. How can ECHILD data be used?

4. What is the lawful basis for using and sharing ECHILD data?

5. Where is the data stored?

6. Your rights

7. Access to your (or your child’s) information in ECHILD?

8. What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?

9. How do I contact the Research team (or Data Controller)?

10. Right to complain to the Information Commissioner’s Office

1.1 What is this Privacy Notice about?

1.2 What is this study about?

1.3 What is the lawful basis for using this information?

1.4 Legal and ethical permissions

1.5 What information will we collect about you (or your child) for the study?

1.6 How will the information be used?

1.7 Where and how long will the data be stored?

1.8 Access to your information in the study?

1.9 What if I do not want my data (or child’s data) to be used beyond the purpose of providing healthcare?

1.10 How do I contact the Research team (or Data Controller)?

Additional information / links

1.1 What is this Privacy Notice about?

1.2 What is this study about?

1.3 What is the lawful basis for using this information?

1.4 What information will we collect about you (or your child) for the study?

1.5 How will the information be used?

1.6 Where and how long will the data be stored?

1.7 Your rights

1.8 Access to your (or your child’s) information in the study?

1.9 What if I do not want my data to be used in this study?

1.10 How do I contact the Research team (or Data Controller)?

What is this Privacy Notice about?

Who are we?

What is congenital hypothyroidism?

Why are we doing this project?

The data used in this project

How we will use these datasets

What information will we collect about you (or your child) for the study?

Where to find the results

Data Storage and data Retention

What is the lawful basis for using this information?

Your rights

What if I do not want my data (or child’s data) to be used in this study?

Read this patient notification in an alternate language

1.1 What is this Privacy Notice about?

1.2 What is this study about?

1.3 What is the lawful basis for using this information?

1.4 What information will we collect about you (or your child) for the study?

1.5 How will the information be used?

1.6 Where will the data be stored?

1.8 Access to your (or your child’s) information in the study

1.9 What if I do not want my data (or child’s data) to be used in this study?

1 - Who we are

2 - Why are we doing this project?

3 - What are we doing?

4 - The data used in this project

5 - Confidentiality

6 - Patient Notification/Fair Processing Notice

7 - Where to find the results

8 - Legal and ethical permissions

9 - Data storage and retention

10 - Your options

11 - Further information

Section Head

Contact Us

Population, Policy and Practice

UCL Great Ormond Street Institute of Child Health30 Guilford StreetLondon WC1N 1EH

UCL Great Ormond Street Institute of Child Health
30 Guilford Street
London WC1N 1EH