d. What personal data does the study collect?

We do not collect directly identifiable personal data such as name, address or postcode. We do collect a minimum number of data items that are needed to run the study and these are stored securely within the study database. They are used to link and merge records for patients we think have attended more than one centre for care, so they have only one study record for data analyses.

All these data items are removed or anonymised for the final datasets used for research analyses. 

We do collect a minimum number of data items that are needed to run the study: clinic identification number, date of birth, gender, ethnicity, an encoded version of a patient’s surname [Soundex], first initial and date of death.

All these stored data items are removed or anonymised for the final datasets used for research analyses; clinic identifier is replaced by a study number, date of birth is reduced to year only; gender and ethnicity are coded; and Soundex and initial are removed. Full date of death is kept as an accurate record of mortality.

These measures, combined with robust safeguards to limit access, ensure that it is highly unlikely that our data could be used to identify any individual