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 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 NHS Digital.

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 added from routine health records

We have asked your permission to add information held by the NHS about you to the survey data. We also asked your partner (if you have one) for permission to add their records.

This includes information 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.

If you gave us permission, we have added information from your health records to your survey data. The data is now available via appropriate conditions of access to researchers via secure mechanisms such as the UK Data Service or similar organisations, including as part of the UK Longitudinal Linkage Collaboration (UK LLC). We have not yet added this information for your partner (if relevant).

These records, combined with the information you have 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 England’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 England 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 035 5761 or email us at bcs70@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 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, such as UK LLC.

Information added from routine economic records

We have asked your permission to add information held by the Department for Work and Pensions (DWP) and HM Revenue & Customs (HMRC) to the survey information held about you. We also asked your partner (if you have one) for permission to add their records. Department for Work and Pensions (DWP) records include information such as benefit claims and periods on employment programmes, HM Revenue & Customs (HMRC) records include information such as employment, earnings, tax credits and occupational pensions, and National Insurance contributions.

We are now in the process of adding this information from your records to the survey data via the UK longitudinal Linkage Collaboration (UKLLC). We are not yet adding this information for your partner (if relevant), but we are intending to add information from their records in the near future too.