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 the NHS Digital Data Access Advisory Group.
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
At the Age 50 Survey, we asked you (or your partner – if you had one) 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.
If you gave us permission, we are now starting to get some information about your health and have added some information from your hospital records. We have not yet added this information for your partner (if relevant).
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 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 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 035 5761 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 NCDS 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 routine economic records
At the age 50 survey we also asked if we could add to the survey data information held about you (or your partner – if you had one) by:
– the Department for Work and Pensions (DWP), such as benefit claims and periods on employment programmes, and
– the Her Majesty’s Revenue and Customs (HMRC), about 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. We have not yet collected this information for your partner (if relevant), but we are intending to add information from their records in the near future too.