Adding information

Government departments and agencies, such as the National Health Service (NHS), routinely collect information about all of us to help them plan and provide the services we need. This information is stored in what are called administrative records.

We would like to add information held in administrative records about you and your child to the information we collect as part of the study, to help us build a more complete picture of your lives. This makes the study even more useful for researchers and policymakers, who will use this information to improve public services for everyone.  

We would like to add information from your health, education, and social care records, and your child’s health, education and social care records.

This information relates to your and your child’s past, present and future circumstances. We would like to add information from these records on an ongoing basis for the duration of the study.

• The information in these records contains more detailed information about the government services you use. This means we do not have to ask you so many questions in the survey.
• Combining information from administrative records and survey responses helps researchers build a more complete picture of your family and how you use healthcare, schools and other services. This helps us understand the important factors that affect how children develop and how services could be improved to make lives better. 
• The study is about what affects children’s lives now and into the future, so it is very valuable for researchers to know about current, past and future circumstances. This is why being able to add information from administrative records both going back in time, and also ongoing into the future is so useful.
• Because adding information from administrative records is so useful, it is done routinely in many other similar studies. It makes the study even more useful for researchers and policymakers, who will use this information to improve public services for everyone.
• For example, adding information from education records can help the government understand how children progress in different schools, and which kinds of schools are most effective at helping children to learn and grow. As a result, education services can be improved for families across the country.

Generation New Era wants to hear from all mothers and fathers about their baby, and their experiences as a parent, regardless of different family and living arrangements. We, therefore, want to add information from administrative records to the study data for all parents taking part in Generation New Era. For example, adding information from the health records of both mothers and fathers will allow researchers to understand the needs of parents and carers with health conditions, and the links between parent and child health.

If at the time of your interview you had a partner living with you that is not your child’s birth parent, we asked them if they would like to be interviewed as well and about adding information from administrative records to their survey data. Adding information from their administrative records will help us build a full picture of family life.  

What information will we add?

We would like to add information from health records about you and your child until they are 14 held by the following organisations to your survey information.

• NHS England 
• Digital Health and Care Wales
• Public Health Scotland 
• NHS National Services Scotland
• Health and Social Care (HSC) in Northern Ireland

These health records include information such as admissions or attendances in hospital (including maternity records), visits to a GP or other health professional (e.g. midwife), mortality data, cause of death, specific conditions and prescriptions given.

Why add this information?

Adding this extra information will mean more detailed research can be done on things like:

• Which factors are linked to particular illnesses
• How some illnesses impact children’s wellbeing and how they get on in school

What information will we add?

We would like to add information from education records about you and your child until they are 16, held by the following organisations:

• The Department for Education in England
• The Welsh Government Knowledge and Analytical Services  
• The Scottish Government Education Analytical Services 
• The Northern Ireland Department for Education and the Northern Ireland Department for the Economy

These records will include information about education such as exam results and participation in further education, special education needs, as well as details about the schools or colleges attended. These records also cover use of childcare services.

Why add this information?

Adding this extra information means more detailed research can be done on things like:

• How children’s experiences when they are very young affect how they do when they start school
• Which childcare services are being used
• How parents’ education influences their parenting and educational choices for their children 

What information will we add?

We would like to add information from social care records about you and your child until they are 16, held by the following organisations:

• The Department for Education in England
• Public Health Scotland
• The Scottish Government
• The Welsh Government
• Health and Social Care (HSC) in Northern Ireland

These records include information on any help received from social services – including visits from social workers and experiences of social care.

Why add this information?
Adding this information can help increase our understanding of how social services are used among families in the UK and how to help improve public services for everyone.

Adding this extra information will mean more detailed research can be done on things like:

• How social services can affect how well children do at school 
• How social services can affect children’s and parents’ wellbeing as they grow up

1. You and your child will be assigned a unique identifier code (unique ID).
2. We securely send you and your child’s unique ID, name, sex, address and date of birth to the named government departments and agencies that hold your administrative records, or to another organisation that holds the records on their behalf. These personal details will only be used to help identify your records accurately. During this process, we do not send your survey responses or any other information about you or your child to these government organisations.
3. The government departments and agencies use your personal details to find your records.
4. The government departments and agencies then send the information taken from your records, together with your unique ID, back to the Generation New Era team or to the data store that will hold the information.
5. Your unique ID is used to match the information from your and your child’s administrative records to your survey responses.
6. The linked data containing the survey responses and administrative data is made available to researchers via the UCL Data Safe Haven, UK Data Service and other secure research environments. The data used by researchers does not contain any names, addresses, or other personal details that could directly identify individuals in the study.

During the matching process, your information is encrypted and sent via secure transfer systems, in line with the most up to date security rules and procedures. More detail about how we keep your information safe can be found in our Privacy Notice.

• The matched survey and administrative information will be used for research purposes only. Researchers will explore characteristics from these records that many people share (e.g. they might study differences between people who did and did not go to university). This means that statistics would only be reported about groups of people, and never about any individual person.
• Like your study responses, this information will be de-identified and made available securely for research purposes only. Personal data identifying you or your child are never included in the data used for research. Access to the linked administrative data will only be granted in a secure research environment and after a successful application, assessed and approved by the Generation New Era team and - if required - by the respective government department. This is to make sure the information is used responsibly and safely. Your name, address and NHS numbers are never included in this research data.
• Adding information from administrative records will not affect your or your child’s services, rights, treatment or any health insurance. It will not affect your benefits or tax. All information is treated in the strictest confidence in accordance with the Data Protection Act and the General Data Protection Regulation (GDPR). The lawful basis on which we process your personal information is a ‘Task in the Public Interest’. The privacy notice explains how we keep your information safe and can be found on our Privacy Notice page. More information about privacy and confidentiality is available here on our Looking after your information pages.

No. Government departments and agencies will only receive the personal details they need to establish an accurate match to your records – such as name, address, date of birth, NHS number (if available) – nothing more. After your records have been identified, these personal details used to match your records will be deleted. None of your survey responses will be given to government departments and agencies during this process.

No. As part of your interview, you were told how to make your choice about adding information from all of the records we ask about, from just some of the records, or to add nothing at all.

During the interviews, we only asked the parent who did the longer interview about this.

Only a parent with legal parental responsibility can decide about adding information from your child’s records, both during and after the interview.

Yes, you can contact the Generation New Era study team to check this.

You can change your mind about adding information from administrative records at any time without giving us a reason, for the duration of the study. You can change your permissions using our online form.

If you change your mind about adding information, any data already collected will continue to be used unless you explicitly request that we delete it.

When your child is an adult (or earlier if he or she can demonstrate that he or she is old enough to understand), he or she can decide whether or not to allow their information to be added, without giving us a reason. The information from administrative records for children will be added up to age 14 for health records and age 16 for education and social care records.

If you decide you do not wish to take part in Generation New Era in the future, or if we lose touch with you, we will still continue to add information from your records to your existing survey data unless you contact us to tell us to stop.

We will add information about the local area or property where you live. This could be information such as air pollution levels, green spaces, local amenities or the energy efficiency of your home. Frequently, these geographical data are publicly available. We plan to do this for everyone who takes part in the study, but if you prefer that we don’t do this, please let us know.

Where we live has a huge impact on many aspects of life, so understanding more about where you live and your local area is very useful for research. For example, research on a similar study of children born in the early 2000s has shown that exposure to air pollution may be linked to children doing less well on average on some cognitive development tasks, which has helped highlight the importance of improving air quality, including close to schools and children’s playgrounds. Researchers will also be able to look at things like whether living close to parks and other green spaces has an impact on health and well-being.

We did not ask you to agree to adding this kind of 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.

If you prefer that we don’t do this, please let us know using:

Freephone: 0808 175 6330

Email: gnestudy@ucl.ac.uk

Freepost: Freepost GENERATION NEW ERA

Any data already added will continue to be used unless you explicitly request that we delete it.