Adding other information

Do you add any other information to my data?

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 Next Steps even more valuable as it means researchers can use it to answer even more questions about society.

When you first joined the study, your parents gave permission to add information from your school records to the survey data. As part of the Age 25 Survey, we asked for your permission to add information from a number of other administrative records. As part of the Age 32 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. Find out more about this in the information booklet about data linkage, titled ‘Adding Other Information About You‘.

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 their answers to the surveys. The government bodies or agencies only use these details to identify the records in their systems and then send us 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The permissions for adding other information can be changed or withdrawn at any time, without giving us any reason.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: Next Steps, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or by emailing the team at nextsteps@ucl.ac.uk.

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.

 

 

What other information have you added to my data?

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

When you first joined the study, your parents gave permission to add information from your school records to the survey data. As part of the Age 25 Survey we asked for your permission to add information from your health, education, work and benefits records, as well as any police and criminal justice records you may have. We have already started adding some information from these records to the information we have collected about you as part of the survey.

Find out more about the information that we have added below:

  • Information added from routine education records

At the start of the study, your parents gave permission to add information from your school records, kept by the Department for Education (DfE), to the survey data. At the Age 25 Survey, we asked you if we could add to the survey data, information from your further and higher education records, held by the Department for Education (DfE), the Higher Education Statistics Agency (HESA), the University Colleges and Admissions Services (UCAS) and the Student Loans Company (SLC).

We have already added some information about your performance at school (up to age 16) and have made this information available to researchers under restricted access arrangements. We have also added information from your further education (up to age 19), but we have not yet added information from your higher education records.

These records, combined with the information you’ve given during the surveys, will allow researchers to better understand your experiences during and after leaving school, and can help provide better education and training opportunities.

  • Information added from routine health records

At the Age 25 Survey, we also asked you if we could add to the survey data, some information held by the National Health Service (NHS) about your health such as visits to the doctor, nurse or midwife, hospital attendance or admission and the dates of these visits, health diagnoses or conditions, medicines, surgical procedures or other treatments you have received.

We are now starting to get some information about your health. For example, we have already added some information from your hospital records.

For those of you in England, NHS Digital hold all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset, and we have linked this information for individual participants in the study, who have consented to this. This linked information is available to researchers under restricted access arrangements.

For those of you in Scotland and Wales, your medical records are held by the Information Services Division (ISD) of NHS Scotland and NHS Wales. As very few of you live in Scotland and Wales, we do not plan to link this data at present.

As part of the UK Longitudinal Linkage Collaboration, we are adding other 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’.

These records, combined with information you’ve given us during the surveys, will allow researchers to look in greater detail at what affects your health, including the  factors that prevent or contribute to poor health, and how your health can affect other aspects of your life. This will help policymakers improve services for you and other generations.

  • 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 977 4566 or email us at nextsteps@ucl.ac.uk.

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 Next Steps 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 25 Survey, you have been asked for permission for your economic records to be added. This includes information about benefits, employment, earnings, tax credits and occupational pensions, and national insurance contributions.

We are now in the process of adding this information from your economic records, kept by the Department for Work and Pensions (DWP) and by Her Majesty’s Revenue and Customs (HMRC). This information will give us a better picture of your economic circumstances without asking additional questions in the interview. It will help researchers understand how your generation is managing in this difficult economic climate.

  • Information added from criminal records

As part of the Age 25 Survey, we also asked for your permission to add information from any police and criminal justice records you may have, kept by the Ministry of Justice.

We have not yet collected this information, but we are intending to add some information from these records in the near future.

 

How long will my permission last?

The administrative information we add relates to your past, present and future circumstances. We have not put an end date on the permissions that you give as we do not know exactly when we will add this information. Any permission you give for adding administrative information to the information we collect as part of the study will remain valid and we will collect these records on an ongoing basis – unless you tell us to stop. As our aim is to follow your whole life’s journey, we have not set a time limit for how long we will keep your records.

 

Can I change my permissions?

You can withdraw permission at any time for your NHS, DWP, or HMRC records to be added to your study answers without giving us a reason. This applies for any permissions that you (or you partner) may have given in the past. If we have already added some of your information, we will continue to use it for research purposes only, but we will not add any further information from your records.

To change your permissions, please email the Next Steps team at nextsteps@ucl.ac.uk or write to: Next Steps, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London WC1H 0AL.

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 Next Steps 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.

Who will use the linked survey and administrative information?

The information will be made available to researchers under restricted access arrangements via the UK Data Service (UKDS) or similar organisation. Researchers based within the Centre for Longitudinal Studies may be given access to the linked data via the highly secure UCL Data Safe Haven (DSH). Access to the data via the UKDS or the DSH will only be granted in these secure research environments and after a successful application procedure, assessed and approved by the CLS Data Access Committee team and the relevant government department or agency (if required). This is to make sure this information is used responsibly and safely.

Information provided to researchers will never contain your name, address, date of birth, NHS or NI number.