Information added from mortality records
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 to 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.
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 added from administrative records
At previous surveys, your parents may have given permission to add your school and/or health records to the information we have collected about you as part of the survey. We also collected their consent to add information about some of your siblings, where relevant, and they may have also previously given permission for their own health and/or economic records to be added to the survey data.
If your parents agreed to this, we have already added some of this information to your survey data. Find out more about the information that we have added below:
- Information added from routine education records
At the age 5 survey we asked permission from the parents of those of you in England to add information from your school records called the Foundation Stage Profile. When you were 7, we asked for their permission to collect information about your performance at school up to age 16. This includes Key Stages assessments and GCSEs in England and Wales, and Northern Ireland, and 5-14 levels and Standard Grades in Scotland. Your parents’ permission may have also been sought at the age 3 survey and/or the age 7 survey for accessing information from education records for your siblings (if relevant).
We have already added some information from these records. For those of you in England, Wales and Scotland, we have added some information from your primary school records. For those of you in England we have also added information from your secondary school records, including your GCSE results. We have not yet collected this information for your brothers or sisters (if relevant).
These records, combined with the information you’ve given us during the surveys, will allow researchers to better understand your experiences at school and help provide better education and training for your generation and future ones too.
- Information added from routine health records
At the 9-months Survey, we asked your mother for her permission to add information about you from her pregnancy and birth hospital records and your birth registration records. If permission was obtained, these records have been accessed and made available to researchers. This information is of great benefit to the study as it gives researchers a more complete picture of your very early life conditions, which we know can have important long-term effects on development.
At the Age 3 Survey, we asked for your parent or guardian’s permission to add information about hospital admissions and treatments you might have received from birth to age 7 years. This information is held in routine records kept by the National Health Service. This permission was again sought at the Age 5 Survey, to ensure everyone had the opportunity to consent.
Then at the Age 7 Survey, your parents were asked for their permission to access information about you, and about your brothers and sisters (if relevant), held in routine health records from birth to age 14. These records relate to admissions or attendances at hospital, visits to a family doctor or other health professional, records of specific conditions, and prescriptions given. We also sought their consent for their own health records to be added.
If you gave us permission, we are now starting to get some information from your health records. For example, for those of you in England, Scotland and Wales, some information from your hospital records has been added. We have not yet collected this information for your siblings (if relevant) and for your parents we have only done this for those of you in Wales.
These records, combined with information you’ve given us during the surveys, will allow researchers to look in greater detail at what affects the health of children of the new century, and how policy makers might improve things for you and younger generations.
For those of you in England, NHS Digital hold all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset, and we will link this information to the information collected about you as part of the study after the Age 17 Survey. The information provided by NHS Digital may also include civil registration data from the Office for National Statistics. For those of you in Scotland and Wales your medical records are held by the Information Services Division (ISD) of NHS National Services Scotland and NHS Wales Informatics Service’s Information Services Division (ISD), which have already sent us your records. We are aiming to make them available to researchers soon. For those of you in Northern Ireland, it is the Northern Ireland Health and Social Care (HSC) that maintains this information. We have not yet applied to them for your records.
As part of the UK Longitudinal Linkage Collaboration we are adding information from your NHS health records to support research into COVID-19. This includes your COVID-19 test results, if you had one, and your vaccination status. We are only doing this if you have given us permission to add information from your health records. If you took part in the COVID-19 web surveys and have used the COVID-19 symptom tracker app, the data collected by the app will be linked to your survey data unless you have opted out of this. See the FAQs, ‘COVID-19 Survey – COVID symptom tracker’.
- Information added from GP records
You may have heard in the news about NHS Digital’s plans to create a national central database of GP records. If you have given us permission to access your health records held by NHS, we will be asking NHS Digital to send us your records from this new GP database so we can add them to your survey data. We will not send any of your survey responses to the NHS.
If you don’t want us to add your data from the GP database or any other NHS records to your survey data, you can contact us to withdraw your permission. You can call us for free on 0800 092 1250 or email us at firstname.lastname@example.org.
Please note that opting out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out, is separate to opting out of us adding your health records to your survey data. If you have previously given CNC permission to add your health records to your survey data, then we will continue to do this. But if you don’t want this to happen, please let us know using the contact details above.
We would like to assure you that the data will never be used for commercial purposes and will only be used for research. The data will be made available via appropriate conditions of access to researchers via secure mechanisms such as the UK Data Service or similar organisations.
- Information added from economic records
At the Age 7 Survey, your parents were asked for permission for their economic records to be added. This includes information about benefits, employment, earnings, tax credits and occupational pensions, and national insurance contributions. The consent for the linkage of information on benefits and employment was updated at the Age 11 Survey.
We are now in the process of adding this information from your parents’ economic records, kept by the Department for Work and Pensions (DWP) (and the Northern Ireland Department for Communities, Social Security Agency) and by Her Majesty’s Revenue and Customs (HMRC). This information will give us a better picture of your family economic circumstances without asking additional questions in the interview. It will allow us, for example, to examine in better detail the impact of family economic circumstances on your educational progress.