Government departments and agencies hold information about people which they use for routine administrative purposes. From time to time, we add information from these routine administrative records to the study data. We only do this if we have permission from the people whose data are being linked. Adding this information to the survey data helps to build up an even fuller picture of participants’ lives. This makes Child of the New Century even more valuable as it means researchers can use it to answer even more questions about society.
At previous surveys, your parents may have given permission to add your school and/or health records, and those of your brothers and sisters, to the survey data. For people under 16, parental permission is needed. They may have also given permission for their own health and/or economic records to be added. At the Age 17 survey, we asked you for the first time, to give your own permission to add other information about you.
To add other information to your data, if you have given us permission, we securely transfer your personal details (such as name, sex, date of birth, address, NHS and National Insurance number – if held) to the government department or agency (or to a trusted third party employed by the government department or agency). We don’t send any other information about your, or any of your answers to the surveys. The government bodies or agencies only use these details to identify the person in their systems and then send the information from these records to us or to the data store where we deposit the study data. These departments and agencies are trusted to keep your personal details secure (and are likely to already have your personal details) and have robust systems to manage this.
When the information from the records is sent to us or to the data store, it is added to the information collected in the study, and made available to researchers under restricted access arrangements. Names, addresses, National Insurance and/or NHS numbers, are never disclosed to data stores or to researchers.
The permissions for adding other information can be withdrawn at any time, without giving us any reason. This can be done by writing to us at: Child of the New Century, 20 Bedford Way, London, WC1H 0AL, or by emailing the CNC team at email@example.com.
We also add mortality data – NHS Digital periodically inform us if study members have died. The files we receive from NHS Digital tell us when study members have died (month and year) and the cause of death. Receiving this information helps us ensure we do not try to contact people who have died. We also use it for important research. In order to receive this information from the NHS we have to obtain special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and the NHS Digital Data Access Advisory Group.
We also add information which is not about you individually, but is about, for example, the school you go to or the area you live in. Any information like this provided to researchers is de-identified and cannot be used to find out who is in the study.