Medical follow up, ethics and regulation
As well as the follow-up through questionnaires, each participant in EPIC-Oxford is followed for cancer incidence, the diagnosis in hospital of a range of other diseases potentially related to diet, and for causes of death through NHS and other government registers.
In England and Wales this linkage is done through NHS Digital. To do this, identifiable data including name, NHS Number and date of birth plus a unique study identifier is supplied by the study investigators to NHS Digital. NHS Digital has a record of all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset and links this information to individual participants in the study. This linkage was carried out under Section 251 of the NHS Act 2006, however in May 2021 the Independent Group Advising on the Release of Data (IGARD) agreed that the consent given by the participant would be valid in this case to provide HES data. In addition NHS Digital are able to provide us with information about people who have died (mortality data). This information includes date and cause of death information supplied by NHS Digital on behalf of the Office for National Statistics and is sourced from civil registration data. NHS Digital then supply the linked mortality data information together with the unique study identifier back to the study.
For participants in Scotland equivalent data linkage is performed by the Public Benefit and Privacy Panel for Health and Social Care and the NHS Central Register (NHSCR).
When we receive linked data, we remove all identifiers except for data of birth and date of death. All subsequent analyses use only subsets of the de-identified data. The identifiable data will be held only at the Nuffield Department of Population Health’s Cancer Epidemiology Unit at the University of Oxford. No data are released or shared in any form that would enable individual participants to be identified.
Participants can request more information about how we use their data and also find out about their options to withdraw consent for us to use their data in our FAQs.