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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 Digital. 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 Digital’) 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 Digital’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 (or child’s 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 Digital 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 Digital’s website for further details: http://content.digital.nhs.uk/yourinfo

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 Digital

http://www.ucl.ac.uk/isd/itforslms/services/handling-sens-data/ig-documentation/CON-321538-B5D8B.pdf

 

 

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 Digital, 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 in this study?
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 Digital 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 Digital’s website for further details: http://content.digital.nhs.uk/yourinfo.

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

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 their families. It is led by Dr Katie Harron 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 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?
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 Digital, 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 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 in this study?
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 Digital 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 Digital’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.

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, the Office for National Statistics, and Public Health England. 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 (including people without Down's syndrome, for comparison) born between 1 April 1997 and 31 March 2014; or about whom a Down's Syndrome diagnosis was registered on the between 1 January 1996 and 31 December 2013. We will use data about Down's syndrome diagnosis recorded by the National Down's Syndrome Cytogenetic Register (held by Public Health England), hospital 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).

Data from the National Down's Syndrome Cytogenetic Register at Public Health England will be used and includes information about the date of test and whether the baby was live born or unknown (data about other outcomes is not being used). 

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

  • Direct identifiers such as name, date of birth, address and NHS number.
  • 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 about:

  • 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.

Personally identifying information (including names, addresses, dates of birth and NHS numbers) will be processed by the data providers (Public Health England and NHS Digital) in order to link records that belong to the same person. All data will have direct identifiers removed (e.g. name, date of birth, NHS number) before it is transferred to the research team. 

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 Digital and the Office for National Statisitcs 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

Data will be stored on the 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).

Different parts of the data may be subject to different retention periods as agreed with the different data providers. These retention periods are still being negotiated and will depend on when the data are provided to UCL but are expected to be until at least 2022. Retention of data is necessary to ensure that analyses can be checked and to adhere to guidelines on reproducibility of research.

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 (or child’s data) to be used in this study?

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 Digital 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 Digital’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 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.

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 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. CPRU will analyse variation by patient characteristics (e.g. age, gender, GP registration), and by area/unit level area characteristics such as trust, GP practice characteristics such as QOF scores, and area indicators for deprivation.

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

c) CPRU 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 by cause of admission and death by cause of death).

What will be done with the data?

We will use longitudinal HES data, linked to civil death registrations, to construct cohorts for a number of patient subgroups, and defined by age, sex, and clinical characteristics, to address the questions above. All analyses will be done within the UCL safe haven. Outputs are restricted to aggregate results with non-disclosive cell sizes.

Information collected for this research

We have a data sharing agreement with NHS Digital (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 have authorisation to hold and process records for deaths registered in England. The specific dataset we are authorised to process by NHS Digital 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

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:

  1. 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
  2. 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.
  3. Comparing outcomes for vulnerable mothers (e.g. those with a past history of adversity-related injury admissions) 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 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. The results may be used to inform NHS services through, for example, targeting of preventive care strategies, 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

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 making applicable.

However, the government department providing access to the records (‘NHS Digital’) 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 Digital’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 to be used in this study?

You have the right to tell NHS Digital 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 Digital’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

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.

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 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 Digital (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 Digital 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 Digital: https://www.ucl.ac.uk/isd/it-for-slms/research-ig/approved-information-governance-documents
•    NHS Digital’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

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”.

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

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.


However, the government department providing access to the records (‘NHS Digital’) 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 Digital’s transparency notice as the link below: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-s...

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

You have the right to tell NHS Digital 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 Digital’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
UCL Institute of Health Informatics 
222 Euston Road
London. NW1 2DA
Email: r.gilbert@ucl.ac.uk 
Telephone: 020 3549 5670 

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

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.

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

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

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

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.

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.city.ac.uk/about/city-information/legal/fair-processing-notices2/dars-nic-10094-p6p4b-v4.2). 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 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 Digital, 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 current birth database does not contain any identifying information, such as names, 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 Digital staff who do not have access to any clinical data. ONS will securely transfer mother and child identifying information (including NHS numbers) to NHS Digital 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. 

The air pollution and building characteristics data, which do not include any information about individuals, will be linked to the existing birth database using the mothers’ full postcodes. This will be done by ONS staff who do not have access to any clinical data. Linkage will be carried out by extracting a list of residential postcodes and study numbers (one for each mother) from the identifier database. The postcode list will be linked to buildings and air pollution data before postcodes are removed. The study numbers will be used to link the buildings and air pollution data to the hospital and birth registration data.

At no point will identifying information about you or your child, such as NHS numbers, full postcodes or dates of birth, 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.

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/. 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 Regulation (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 Digital). These retention periods are still being negotiated but are expected to be until at least 2022. 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 Digital 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 Digital’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.

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.  

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.  

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 June 2023. 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/  

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. 

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.

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

Privacy notice

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.

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

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 Digital (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 Digital 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 Digital: https://www.ucl.ac.uk/isd/it-for-slms/research-ig/approved-information-governance-documents
- NHS Digital’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

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”.

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

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 making applicable.

However, the government department providing access to the records (‘NHS Digital’) 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 Digital’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 to be used in this study?

You have the right to tell NHS Digital 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 Digital’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 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
UCL Institute of Health Informatics 
222 Euston Road
London NW1 2DA
Email: r.gilbert@ucl.ac.uk 
Telephone: 020 3549 5670 

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

Download the privacy notice as a PDF.

The DHSC-ECHILD-COVID study on the impact of the COVID-19 pandemic on vulnerable children and young people.

This research uses information collected from administrative sources to conduct research in order to understand the effect of the Covid-19 shutdown on the health of children and young people. It is led by Professor Ruth Gilbert of the UCL Great Ormond Street Institute of Child Health (see below for contact details). The study is funded by the National Institute of Health Research through the Children and Families Policies Research Unit.

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 understand the impact of the Covid-19 pandemic on all children and young people, particularly on those who are vulnerable. COVID-19 infection and lockdown are likely to impact most on children and young people (CYP) who are vulnerable, including those who need safeguarding, live in poorer families, have special educational needs, or long-term health conditions. In particular, we urgently need to understand the health and social effects of household confinement on vulnerable children compared with others, given the disruptions and limited access to support from health, social care and education services.

We have two research questions:

1: What are the differences in emergency hospital contacts during the COVID-19 pandemic for vulnerable compared with other children? Is there any evidence that differences are related to COVID-19 infection or the secondary effects of lockdown?

2: What is the predicted deferred health care use and what are the long-term health, education and social care outcomes for all children, especially those who are vulnerable, due to restrictions during the COVID-19 pandemic?

As vulnerable children are hard to identify in healthcare records, we will identify them through administrative data histories of ever being a Child in Need (CiN), having special educational needs (SEN), a chronic health condition requiring hospitalisation, or combinations of these.

The study uses de-identified, linked administrative data from hospitals (known as Hospital Episode Statistics) and information on education and social care that are routinely collated for all children in state-funded schools by the Department for Education (DfE National Pupil Database) covering all children and young people (up to age 24 years inclusive) in 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 the linked, de-identified hospital data that is collected from hospitals and schools in England. This study uses data only for children born on or after 01/09/1995. The use of these data will allow us to evaluate whether there are any differences in emergency hospital contact for vulnerable children and other children and young people, and to evaluate the role that Covid-19 has to play in any difference we might find. We will also estimate the level of healthcare deferred due to the pandemic, and predict any long term health, education or social care outcomes that could result.

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) will have been removed before transfer of any data to the researchers. The researchers cannot identify individuals under any circumstances.

In order to examine health and education outcomes, the researchers will use data that has been linked using personal identifiers from hospital and education by NHS Digital. To do so, the Department for Education will send only identifiable data (names, date of birth and postcode) but not ‘attribute data’, such as information about schools or exam results, to NHS Digital. NHS Digital will link the identifiers to NHS identifiers. For those children who link, NHS Digital will create  a study linkage key for those records that link. This linkage key is anonymised and cannot be used to re-identify an individual. NHS Digital will destroy the real-world names and postcodes received from the Department of Education after 12 months. The anonymous study linkage key will be transferred to the UCL researchers  to enable 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.

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 evaluate whether there are any differences in hospital contacts during the Covid-19 pandemic between vulnerable children and other children, and how much of that difference is due to Covid-19.

  2. To predict any long term health, education and social care outcomes due to deferral of health care use for children and young people during the Covid-19 pandemic.

  3. To assess how well data matched from different administrative sources can a) inform child health and education outcomes in England and b) identify children and young people as vulnerable. We will assess how patterns of hospital contacts change before, during and after the pandemic for vulnerable groups, compared to other children. Secondly, we will examine whether health care use appears to have been delayed during the pandemic, and the likely implications for service providers. These results are important for developing strategies and improving services to help reduce the adverse health and social effects of the current and future pandemics on vulnerable children.

The findings of the study could be used to develop interventions in schools or better ways to manage hospital care for children who are vulnerable. It may also help to develop healthcare services and support for children after the r Covid-19 pandemic.

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 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 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.

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 Digital’) 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 Digital’s transparency 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 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 (or child’s 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 Digital 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 Digital’s website for further details: http://content.digital.nhs.uk/yourinfo

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 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

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

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.

Understanding the health needs of mothers involved in family court cases

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 mothers involved in public family court proceedings. It is led by Professor Ruth Gilbert. The study is funded by the Nuffield Foundation. 

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?

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 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 Digital 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 procceding 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 Digital. 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 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 Digital 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 Digital’s website for further details: http://content.digital.nhs.uk/yourinfo

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

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

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 Digital

http://www.ucl.ac.uk/isd/itforslms/services/handling-sens-data/ig-documentation/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?

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 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

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

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.

 

Evaluating educational outcomes for looked after children, children in need and other children


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?

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?

Although it is known that looked after children and children in need perform relatively worse than their peers in the general population, little is known about the reasons for this or how the varied care and ‘in need’ trajectories experienced by children and young people influence outcomes. However, the administrative social care and education data held by the DfE have the potential to further our understanding of the educational progress of this vulnerable population and to evaluate and inform policy and practice in this area. For example, current and certain formerly looked after children are given priority in school admission oversubscription criteria but it is not clear who actually benefits from these provisions or whether they are effective. Our study aims to understand how educational outcomes vary in looked after children, children in need and the general population especially when taking account of complexities inherent in care and need trajectories before and during school. In doing so, we aim to evaluate law and policy in this area. We will also use these data to compare areas according to whether early interventions have been implemented, such as Head Start for mental health.

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 education and social care data that is collected from schools and local authorities in England and collated by the Department for Education (in a database called the National Pupil Database). This study uses data for children in England in state schools from 2005/6. The use of these data will allow us to evaluate whether there are any associations between history of social care and other factors such as special educational needs and mental health provision in schools, and educational outcomes in primary and secondary school. 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
  • Educational data such as school enrolments, special educational needs provisoin, absence and exclusion and exam attainment.

To achieve our aims, it is necessary to have a rich set of control variables including both pupil and care characteristics which can only be provided by linking data on children looked after, children in need and other NPD files. Individual-level data are needed to create a longitudinal record across primary and secondary school for each child in order to determine their contact with social care services (including their age at first contact, how long they remained looked after, how stable their placement was, etc.) and explore associations with educational outcomes including participation and attainment up to Key Stage 5.

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 data will be used by our study in the following ways:

The aims of our research are to:

  • Describe the exposure to and contact with social care services throughout childhood among children in England.
  • Describe educational outcomes (including school admissions, trajectories and exam attainment) for children who are in contact with social care services compared to those not in contact.
  • Explore the potential mediating effects of SEN status, school characteristics, absences and other potentially relevant factors on educational attainment.

Some examples of specific questions we want to answer are:

  • What proportion of children in England are in contact with social care services during childhood?
  • How do characteristics of out-of-home care such as duration and stability affect educational outcomes?
  • To what extent are educational outcomes mediated by school absences, SEN status and school characteristics, particularly among looked after children?
  • How does the school admissions code of practice operate in practice?

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

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 Digital, 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 

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/.

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 Digital'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 Digital). 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 Digital 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

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

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 Digital 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 NHS Digital’s website for further details: http://content.digital.nhs.uk/yourinfo. 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.