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 you. Adding this information to the survey data helps to build up an even fuller picture of participants’ lives. This makes NCDS even more valuable as it means researchers can use it to answer even more questions about society.
In the age 50 Survey in 2008 we asked you for your permission to add information from health records held by the NHS and economic records held by the Department for Work and Pensions (DWP) and Her Majesty’s Revenue and Customs (HMRC) to the information you have given us in our surveys over the years. If you lived with a partner at the time we also asked them for permission to add information from their records.
As part of the Life in Your Early 60s Survey, if you had not previously given your permission to add this information, we will ask your permission again. If you live with a partner who has not previously given permission, we will also ask their permission to add information from their records.
To add other information to your data, if you have given us permission, we will send securely your personal details (such as name, sex, date of birth, address, NHS and National Insurance number – if available) 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 you, or any of your answers to the surveys. The government bodies or agencies only use these details to identify the records 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The permissions for adding other information can be changed or withdrawn at any time, without giving us any reason. This can be done by writing to us at: National Child Development Study, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or by emailing the NCDS team at firstname.lastname@example.org.
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 went 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.
Watch our video to find out more about adding other information.