How is information about me collected by the ASCEND study?
Information about people taking part in ASCEND comes mainly from the questionnaires you have completed on a regular basis. In addition, we may ask for information from your GP or your hospital records about serious illnesses such as heart attacks, cancers or severe bleeding episodes. Information is also received from NHS Digital which holds information nationally from the records that health and social care providers keep about the care and treatment they give; this information received by ASCEND includes information about hospital attendances or admissions (called Hospital Episode Statistics or HES). For patients in Scotland, similar information is requested from the electronic Data Research and Innovation Service (eDRIS), and from the NHS Wales Informatics Service for patients in Wales. Finally, we also obtain information about your eye health from the NHS Diabetic Eye Screening Service.
We send information that identifies you (name, date of birth, NHS number, or CHI number in Scotland, and postcode) to NHS Digital and other NHS data repositories in England, or equivalent service in Scotland or Wales, who have a record of all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset and will link this information to individual participants in the study. NHS Digital also provide us with information relating to cancer registrations on behalf of Public Health England (PHE). In addition NHS digital, or the similar body in Scotland, provide us with information about people who may have passed away. This information includes date and cause of death supplied on behalf of the Office for National Statistics (ONS) and is sourced from civil registration data.