This short privacy notice summarises what the Kids’ Environment and Health Cohort is, what data are held in the cohort, and how to get further information about this project.
Children are much more vulnerable to harmful substances in and around their homes and schools than adults. Many children in England also lack access to services and infrastructure where they live and go to school. Living in areas with high outdoor air pollution, near fast food shops, or 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.
Children will be linked to their mothers’ hospital admission records to allow researchers to take into account the impact of maternal conditions and pregnancy health on child health and education outcomes, and examine pathways, for example between exposure to air pollution and subsequent child health. It will also be possible to link children to their siblings allowing researchers to perform sibling control studies which have been suggested as a method for reducing bias due to familial risk factors in cohort studies of environmental impacts on children.
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 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.
The Kids’ Environment and Health Cohort will be held by the Office for National Statistics (ONS) in a Trusted Research Environment. No data will ever leave the UK at any point, and researchers can only access the data from locations in the UK. You can read about Trusted Research Environments here: https://www.hdruk.ac.uk/access-to-health-data/trusted-research-environments/. All data held in the ONS Trusted Research Environment will be de-identified, and researchers will not be able to see NHS numbers, dates of birth or full addresses.
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.
All residential postcodes and UPRNs, and school postcodes will be securely held by the ONS, separately from data available in the Kids’ Environment and Health Cohort. Linkage to geo-mapped environmental data will be done using encrypted UPRNs, postcodes and school IDs; these geographical identifiers will not be accessible by researchers.
If you would like to know more about the project and how we are using your data, you can have a look around our website: https://kenvh-cohort.org.uk/ You can also contact us at: firstname.lastname@example.org. 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
The privacy notice is available here