If you choose not to take part, the survey agency (or UK government department or agency) will provide UCL with access to your data from birth and/or health records and we will access it for a limited amount of time to understand who does and doesn’t take part.
We do this to help us understand how representative the study is of the wider population, to see if certain groups are more or less likely to participate in the study and to adjust the results of statistical analyses to better reflect the wider population. This is something that is routinely done by similar studies. Understanding the characteristics of those who don’t take part is important to ensure that the circumstances, experiences, and voices of particular groups, such as those from a particular region or ethnic group, are represented in the study, including in policy relevant research. In England, Wales and Scotland, this information is received from birth records and health records and is supplied to the survey agency along with your contact details. It may also be used during fieldwork to make sure the study represents the UK population and includes groups who are less often included in longitudinal studies. The survey agency provides this information to UCL, including for families who do not take part in the study, and we will retain it for a limited amount of time to understand who does and doesn’t take part. For families who do not take part, the information provided to UCL does not include your names or addresses.
In Scotland and Northern Ireland, the data will be accessed securely through approved safe settings — the National Safe Haven in Scotland and the Honest Broker Service in Northern Ireland, hosted by the HSC Business Services Organisation, where the data do not include name or contact information.[KD1]
If you prefer us not to retain or use your data for this purpose, you can contact us and ask us to delete your data – see ‘Contact details of the data controller’ above. The study’s survey agency will only retain your data from birth and/or health records for a limited amount of time and will delete it at the end of their contract with us.