Q & A

We are setting up the Kids’ Environment and Health Cohort to allow researchers to study how local environments in and around children’s homes and schools impact children’s health and education in England. The Kids’ Environment and Health Cohort will be a national data resource, containing routinely collected health, education, vital statistics, and Census data from all children born in England from 2006 onwards, combined with environmental datasets. The Kids’ Environment and Health Cohort will also hold hospital and environmental data for mothers up to a year before birth, to allow researchers to study how environmental factors impact children while they are still in the womb.

The following databases will be used in the development of the Kids’ Environment and Health Cohort:

 

You can learn more about the details and data contained in each of the above datasets by clicking on the links. 

The Kids’ Environment and Health Cohort will also contain environmental data, including on greenspace, air pollution and distance to major roads.

There are a number of reasons why the Kids’ Environment and Health Cohort will contain data for all children in England:

  • The Kids’ Environment and Health Cohort will allow researchers to look at how exposure to different environmental factors varies for children living in different areas of England, and how this has changed over time.
  • Including all children born in England will minimise selection bias (which happens when only some groups of people participate in research studies) and loss to follow-up (when people drop out of research studies). This is particularly important since some groups are more likely not to participate in research, including children who grow up in poorer families. Including all children in England ensures research findings are applicable to all children, not just those who are more likely to participate in research studies.  
  • Many environmental contaminants, including air pollution, lead to small increased risks to health (compared to exposure to parental smoking, for example). Therefore, researchers need large groups of children  to estimate these risks accurately. (Note that although the increase in relative risk of adverse health outcomes due to exposure to air pollution, for example, may be small, the number of children exposed is large, meaning that many children are affected)
  • The nationwide coverage of Kids’ Environment and Health Cohort in a highly populated country such as England will allow researchers to examine risk factors for outcomes which are severe but relatively uncommon, such as stillbirth or infant mortality
  • The Kids’ Environment and Health Cohort will allow researchers to study groups of children who are particularly vulnerable to environmental exposures, including children born prematurely and children with serious long-term conditions or disability. Since a relatively small proportion of children fall into these categories, large study populations are required.

We are working closely with the data providers Office for National Statistics (ONS), NHS England and Department for Education to ensure data are kept safe. 

The different datasets in the cohort will be linked by experienced staff at NHS England and ONS, who link these types of data as part of their job. They will not be able to see the education or health data, only the minimum amount of information required to link the datasets.

Once linked, all the data in the cohort will be stored in the ONS Secure Research Service, a national data safe haven, where researchers will access the data. You can read more about the ONS Secure Research Service here. The ONS Secure Research Service works using a framework called ‘5 safes’ to keep data safe. You can read more about the 5 safes here, or a summary below.

Safe Data: data is treated to protect any confidentiality concerns. 

The Kids’ Environment and Health Cohort will be held in the ONS Secure Research Service. Only a small number of researchers from Office for National Statistics, UCL, and London School and Hygiene and Tropical Medicine will have access to the full datasets. The data in the cohort will not contain any personal identifiers like NHS numbers, dates of birth, or full postcodes. Researchers who want to use the data will have to apply for access and, if approved, they’ll receive only the data they need for their project.

Safe Projects: research projects are approved by data owners for the public good. 

The final access arrangements are being worked through, however we explain here what is likely to be required. Researchers will have to submit an application to use the data, which will be reviewed by UCL (the data controller), the Research Accreditation Panel, and an ethics committee.. They’ll need to show that their project aligns with the purposes for creating the Kids’ Environment and Health Cohort, explain how their findings will benefit the public, especially in terms of child health and education, and justify the data they need to answer their research question. 

Safe People: researchers must be trained and authorised to use data safely. 

Any researchers who want to use the data will need to be approved by the ONS, which means they’ll have had training in handling sensitive data and passed an exam showing they know how to keep data safe.

Safe Settings: use of data in secure environments to prevent unauthorised use. 

The data will only be accessed through the ONS’s Secure Research Service (SRS), which has approved access points. The specific access points used may vary depending on the the project.

Safe Outputs: screened and approved outputs that are non-disclosive.

Any results or findings from the research based on the Kids’ Environment and Health Cohort data will be checked by the ONS staff to make sure that an individual’s identity cannot be deduced.

The Secure Research Service (SRS) is a service provided by the Office for National Statistics (ONS) in the UK. It’s a globally recognized service that follows a set of principles to ensure the safe use of data. The SRS is designed to give accredited researchers secure access to de-identified, unpublished data to work on research projects that benefit the public. You can read more about the ONS Secure Research Service here: https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/secureresearchservice/aboutthesecureresearchservice

We will also provide links and summary reports of all research conducted using the Kids’ Environment and Health Cohort on our website under Publications and Documentation. 

Parents can opt to have their child’s data removed from these datasets by choosing to have  their NHS data not shared beyond NHS England via the National Opt-Out Programme. This will mean that they cannot have their health or education data linked. Similarly, parents who have opted out via the National Data Opt-Out programme will not have their records included. 

Please have a look at our privacy notice for further information.

We are currently in the process of developing the cohort, including drafting data sharing agreements with data providers. We will post further information about how to apply to access the Kids’ Environment and Health Cohort in due course. You can keep up to date with our website and social media channels (@kenvhc on Twitter, @kids_env_health_cohort on Instagram) as we will posting all updates via these platforms.