This privacy notice describes what the Kids’ Environment and Health Cohort is, what data are held in the cohort, and how the cohort is set up. It also describes how to get further information about this project, and what to do if you do not want your data to be included as part of the Kids’ Environment and Health Cohort.
We are a team of researchers from University College London
(UCL). UCL is the data controller for the database created in this
project. We (UCL) are also working with
the London School of Hygiene and Tropical Medicine, London School of Economics
and Political Science, City, University of London, and Brock University (via
one of the project co-investigators, Dr Samantha Hajna). Note that no data will
leave the UK at any point, and researchers can only access the data from
locations in the UK.
Children are much more vulnerable to harmful substances in
and around their homes and schools than adults. Many children in England also
lack access to services and infrastructure where they live and go to school. Living
in areas with high outdoor air pollution or near to fast food shops and having
no access to green space during childhood is associated with the development of
long-term conditions such as asthma, mental health problems and obesity. In
this project, we are setting up a new research database, the Kids’ Environment
and Health Cohort, to allow research into how the local environment influences
health and education in children, and to help understand whether environmental
policies introduced by national or local government are improving children’s
lives in England.
The Kids’ Environment and Health Cohort: a national birth cohort containing de-identified data from all children born in England from 2006 onwards – around 11 million children by 2023. We expect the cohort to be updated annually.
The Cohort will hold routinely collected, linked data from vital statistics (births and deaths) registration and census, health, and education records from children from birth until adolescence. Children’s records will be linked to their mothers’ health record up to a year before birth to allow researchers to take into account environmental exposures and maternal health during pregnancy. It will be possible to link environmental data to the children’s home and school locations via NHS address records and school records. This will be done in a secure way (see below) which protects children’s identities and home and school addresses.
The Kids’ Environment and Health Cohort will be held in the
will be held by the Office for National Statistics (ONS) in a Trusted Research
Environment. You can read about Trusted Research Environments here: https://www.hdruk.ac.uk/access-to-health-data/trusted-research-environments/
The Kids’ Environment and Health Cohort will hold linked data from the following datasets:
A number of environmental datasets about small areas across England, including on air pollution, energy efficiency of buildings, and proximity to major roads, will be linked to the de-identified health and education data as part of setting up the Cohort.
Once the Kids’ Environment and Health Cohort is set up,
researchers may apply to UCL (the data controller) to link in further
small-area level environmental dataset via children’s home addresses or school
addresses). Researchers will need to meet a number of strict criteria in order
to do this, to ensure confidentiality at all times.
All data are kept on highly secure servers at the Office for National Statistics.
Researchers will not be able to access identifying variables such as names, NHS numbers or dates of birth.
The data on children’s home or school addresses will be kept separately to the health and education data. Researchers will not be able to access the address records – these can only be accessed by a small number of staff at ONS. If researchers would like to link further environmental data into the cohort, addresses will be encrypted by ONS staff for this linkage to take place; researchers will never see the full addresses.
Access to the cohort will only be granted to researchers who a) have received ethical approval for their project, b) have demonstrated that their project will support children’s health and education via improvements in living environments, c) protect children’s and mothers’ confidentiality at all times, and d) have received training in how to analyse sensitive datasets safely.
The various vital statistics, health, census and education
data will be linked together using identifying information about mothers and
children. This will be done by staff at ONS and NHS England. ONS will link
birth registration data for the children to death data and their mothers’ 2011
and 2021 Census records.
ONS will securely transfer mother and child identifying information (including NHS numbers and dates of birth) to NHS England, who will link the mothers and children to their address histories, health data, and children’s pupil reference numbers in education data. The address histories and pupil reference numbers, and the linked health data will be transferred back to ONS. ONS will transfer the pupil reference numbers to the Department for Education who will extract the education records for the children in the cohort and transfer these back to ONS.
The health data, Census data, education and vital
registration data will be de-identified (that is, all identifying information,
such as names, dates of birth and NHS numbers, will be removed), before the
datasets are placed in the ONS Trusted Research Environment (called the Secure
Research Service). Researchers will access the Kids’ Environment and Health
Cohort data for their projects via the ONS Secure Research Service.
A smaller number of environmental datasets, including on air
pollution and distance to roads, will also be linked to the cohort by ONS staff
via the ONS address records as part of setting up the cohort. Researchers will
not access these address records.
All researchers working with the data need special training in keeping data confidential and secure. The ONS and NHS England also adheres to strict levels of training and confidentiality awareness for its staff.
Results from studies using Kids’ Environment and Health
Cohort data will be published in open access journals so that they can be read
online and downloaded for free. We will announce these publications and provide
lay summaries for each research project using data of our results on our
website: https://kenvh-cohort.org.uk/.
There are a number of legal bases for processing the data in
the Kids’ Environment and Health Cohort.
Under the General Data Protection Regulations (GDPR), the legal basis for processing personal data for Kids’ Environment and Health Cohort fall under Article 6(1)(e), “a task carried out in the public interest”, and Article 9(2)(j), “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”.
Personally identifying information (including names,
addresses, dates of birth and NHS numbers) will be processed by NHS England and
the Office for National Statistics in order to link the data. For any data
linked by NHS England, this is conducted under section 251 of the National
Health Services Act (2006) and its Regulations, the Health Service (Control of
Patient Information) Regulations (2002). The application was reviewed by the
Confidentiality Advisory Group (CAG). CAG is an independent group of lay people
and professionals which provides expert advice on the use of confidential
patient information without consent. CAG recommended that our application
should be supported and the Secretary of State for Health and Social Care
approved this.
The legal basis for linkage between vital statistics data and
education data, and resharing of data for the Kids’ Environment and Health
Cohort will be the Digital Economy Act 2017.
We currently have funding to set up the Kids’ Environment and Health Cohort; this lasts until December 2025. The retention period for each constituent dataset in the Kids’ Environment and Health Cohort will differ according to the organisation providing data, but we anticipate that the data approvals will be renewed on a continuing basis.
Each project using data from the Kids’ Environment and
Health data will have to specify the amount of time they require to finish
their study. Once the project is finished, the project specific data will be
archived for 2 years.
If you would like to know more about the project and how we
are using your data, please have a look around our website https://kenvh-cohort.org.uk/, or contact
us at: kenvh-cohort@ucl.ac.uk. You may also contact the principal investigator,
Dr Pia Hardelid, post or email, via the UCL Great Ormond Street Institute of
Child Health:
Dr Pia Hardelid
UCL GOS Institute of Child Health
30 Guilford Street
London WC1N 1EN
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.
This research is led by Dr Pia Hardelid at University College London (UCL). It is supported by funding from the Economic and Social Research Council via Administrative Data Research-UK, with additional funding from Health Data Research UK.
University College London is acting as Data Controller for the Kids’ Environment and Health Cohort. You can find further information about how UCL handles data here: https://www.ucl.ac.uk/legal-services/privacy/general-privacy-policy
If you have questions or concerns about the study please contact Dr Pia Hardelid: p.hardelid@ucl.ac.uk, or
Dr Pia Hardelid
UCL GOS Institute of Child Health
30 Guilford Street
London WC1N 1EN
© 2023 Kids' Environment & Health Cohort
