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UCL Great Ormond Street Institute of Child Health

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The data

What data is used in the ECHILD project?

For this project, we have been working with the Department for Education and NHS England to create the ECHILD Database. This new database brings together information about health, education and social care for all children in England for the first time.

Nurse and child in hospital

The ECHILD Database links electronic records that are already collected by the Department for Education and NHS England from the National Pupil Database (NPD) and Hospital Episodes Statistics (HES). NPD and HES are based on information collected from hospitals and schools; for example, NPD has information about absences and HES has information about A&E attendances. Joining this information together will help us understand how children’s education affects their health, and how health affects their education.

Find out more about the data in the ECHILD Database, and where it comes from.

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Download the ECHILD Database User Guide.

The ECHILD User Guide, which aims to introduce researchers to the database by providing a broad overview of its coverage, content and creation, is free to download here:

Find out more about the data within ECHILD.

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Can researchers look in ECHILD Database and find my records?

No - the ECHILD Database is “de-identified” which means it doesn’t contain any information that identifies a person. For example, it doesn’t include names, addresses, dates of birth, pupil numbers or NHS numbers. 

How is the ECHILD Database being kept safe?

Image of family cycling

Keeping the data we use for research safe and secure is a priority for us. One way we do this is by storing and accessing the ECHILD Database in the Office for National Statistics Secure Research Service (ONS SRS). The ONS SRS is a secure system that does not allow researchers to copy or remove data. This means that researchers do not have any data on their own computers. All of our results from the ECHILD project (like tables or graphs) are also stored in the ONS SRS. Before we can use them (for example, in a report), they are checked by an independent team at ONS to make sure that they are safe.

Only a small number of researchers working with ECHILD have access to the data. All of these researchers have been accredited and trained on how to handle data safely and ethically. We are also only allowed to use the ECHILD Database to answer questions that will benefit the public which were agreed at the beginning of the project and have independent ethical approval.

Find out more about how the ECHILD Database is kept safe.

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Find out more about this study’s research, how we collect, manage and use data and what to do if you (or your child) do not wish for your data to be included in research studies.

The UCL research team will not be able to identify you and cannot remove your records from the study directly at your request. You have the right to tell NHS England if you do not want the information you provide to the NHS to be used beyond the purpose of providing healthcare. This is known as a ‘patient objection.' Please visit NHS Englands website for further details: https://www.nhs.uk/using-the-nhs/about-the-nhs/opt-out-of-sharing-your-health-records/. Your choice will not affect the health care or the educational resources you receive.

Please also find more information within the project’s privacy notice. 

Fair processing notice for any data you provide when contacting the ECHILD team

This fair processing notice explains how we (the ECHILD management team) will collect, use, share, and protect personal data. It is a legal requirement under the General Data Protection Regulation (GDPR) and must be provided to individuals when their data is collected. Please read the ECHILD Privacy Notice here for information about ECHILD’s data processing activities.

What happens when you get in touch with us?

When you contact us, we collect your name and email address. We use your email address to send you relevant and timely information about developments of the ECHILD project. If you send us a query, we will respond using your email address. We do not share your email address with any third parties; we do not transfer your personal data to any location. You have the right to stop receiving communications from us at any time by contacting us at ich.echild@ucl.ac.uk

Purpose and lawful basis for processing

When you contact us to make an enquiry, we collect information, including your personal data such as name and email address, so that we can respond to it and fulfil our duty to keep you informed.

The lawful basis we rely on to process your personal data is article 6(1)(e) of the UK GDPR, Public task: “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”.

What we need and why we need it

We need enough information from you to answer your enquiry. If you contact us via email or post, we’ll need a return address for response.

What we do with it

We will safely store your name and email address in an access controlled secure drive (using UCL identification).

How long we keep it

For the life of the ECHILD project, please see the ECHILD Privacy Notice here, or until you tell us to stop communicating with you, at which time we will permanently delete your personal data.

What are your rights?

We are acting in our official capacity to respond to your enquiry, so you have the right to object to our processing of your personal data. Please let us know if you want to stop receiving communications from us.

Do we use any data processors?

We do not use any data processors to handle enquiries or process your personal information.

Further information

The study privacy notice provides more information about how we handle data here.

We would be happy to answer any questions or concerns that there may be about the way that we process your personal data. Please contact us on ich.echild@ucl.ac.uk or write to us:

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

UCL’s Data Protection Officer’s contact details are: data-protection@ucl.ac.uk.
You also have the right to contact the UK Information Commissioner for advice and support: https://ico.org.uk/your-data-matters/.

This Fair Processing Notice is updated regularly and was last updated in August 2023.