What 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.

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) and are preparing it for deposit with the relevant data store, 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. We will make this linked information 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 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.