What information from routine health records have you added to my data?

At age 50 survey, we 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, which means researchers will be able to look in greater detail at what affects your health – what factors prevent or contribute to poor health, and how policy makers might improve things for you and other generations – how health conditions can be treated or managed more effectively.

In our information leaflet about data linkage, entitled ‘Health and Economic Records – Information on Giving Consent’ we said we would like to get information from ‘routine medical and other health related records’. This means that we need to send securely personal data to the where your health records are kept to match them to you.

With your permission, we send your unique survey ID, name, sex, address, date of birth to NHS Digital (formerly the Health and Social Care Information Centre – HSCIC). Where available, we will also send your NHS number. These details are provided to help identify your records accurately. We will not send your survey responses or other information about you.

For those of you in England, NHS Digital hold all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset and will link this information to individual participants in the study, who have consented to this data sharing. For those of you in Scotland and Wales your medical records are held by NHS Scotland and NHS Wales, respectively.

When your health records have been identified the file containing your personal details is destroyed. Just your unique survey ID and the information extracted from your administrative records are sent back to the NCDS team. Your unique survey ID is a string of letters and numbers created just for you which can be used instead of your name or date of birth to identify your study data without identifying you. The NCDS team then match the information from your health records to your survey responses using your unique survey ID. At no point will your name or address be included with the matched data.

To keep your data safe, the information we exchange with NHS Digital is encrypted and sent via secure transfer systems, in line with the most up to date security protocols and procedures.

The NCDS team will add information from your health records for the duration of the study or until you tell us to stop.