Information from administrative records held by Government departments and agencies
Government departments and agencies hold information about people, which they use for 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 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.
If you have given us permission, we will securely send 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The permissions for adding other information can be changed or withdrawn at any time, without giving us any reason.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.
Mortality information from the NHS
NHS Digital periodically informs 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. We do not ask your permission to receive this information but in order to obtain it we have to be granted special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and the NHS Digital Independent Group Advising on the Release of Data also need to grant us permission.
During surveys we have asked you for your permission to add information from your health records to the information you have provided us during surveys. We will receive information about your death even if you do not give us permission to add information from your health records. We will also continue to receive this information if you withdraw from the study, unless you request that the data you have provided to the study is deleted.
Please note that if you opt out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out then the NHS will not send us this information.
Information about where you live
We use your address (and previous addresses) to add information about where you live such as the local environment, weather, pollution and the facilities available (e.g. shops and green spaces). The information that we add may be about your local area as a whole, your street or sometimes your specific address. Where we live has a huge impact on many aspects of life, and so understanding more about your area and where you have lived previously, is hugely useful for research. For example, research using NCDS has used area information from the Census to show that living in deprived areas is linked to poorer health.
All of the information provided to researchers is de-identified and does not allow individuals, or addresses to be identified.
We do not ask your permission to add this information because the data is not individual level information about you. Usually, this information is publicly available and adding this information does not require us to share any of your personal information with any other organisations.
However, if you would prefer that we don’t add any information about your area to your study record then please let us know, by writing free of charge to: National Child Development Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or emailing the NCDS team at email@example.com.
We may also add other information which is not about you individually, but is for example about the school or University that you went to.