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

1. What is this Privacy Notice about? 

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

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

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

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

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

3. How can ECHILD data be used?

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

• i.    Informing preventative strategies by Healthcare and Education services e.g., do disabled children attending schools or living in areas that provide a good level of support in school or social care services for disability have decreased rates of unplanned hospital contacts compared with less supportive schools/areas? 

• ii.    Informing children and their parents e.g., about variation in special educational needs support and outcomes for children with chronic health conditions or disability.

• iii.    Informing education and clinical practice e.g., investigating whether associations between chronic health conditions and lower school attainment are explained by school absence. The evidence would be important for policies to reduce school absences for children with chronic conditions. 

• iv.    Identifying groups who could benefit from intervention e.g., what are the health outcomes of children post age 16 who have contact with social care services or have special educational needs? 

• v.    Understanding the most effective methods for working with linked health and education data e.g., what the most effective methods for working with linked health and education data are. The complexity of ECHILD increases in proportion to the number of datasets and individuals it contains. Therefore, novel approaches need to be investigated to unlock the full potential of the linked data.

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

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

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

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

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

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

5. Where is the data stored?

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

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

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

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

6. Your rights

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

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

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

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

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

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

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

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

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

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

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

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

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

Email: [email protected]
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: [email protected]

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

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