We need to find out whether people in the EPIC cohort have developed cancer or other diseases, or have died. It is important to have this information for all participants for a balanced and well-designed study that is representative of all our participants. This includes participants who continue to take part through attending health checks and completing questionnaires as well as those who no longer are able to do so.
It is only by following all our participants, we are able to make accurate and valid comparisons when we look at diet and other factors in people who have developed a particular disease and people who have not. There are two ways we gather information on health outcomes. The first is directly from the information given to us through health checks and questionnaires and the other is by health records linkage with the appropriate local and national organisations.
We have the necessary approvals in place to allow us to link to health records in this way. This includes explicit consent from our participants at various time points, when they have taken part in a health check and using the powers under Section 251 of the NHS Act 2006. Our approvals are closely reviewed by the relevant governing committees under the Health Research Authority whose role is to protect and promote the interests of patients and the public in health research. Cambridge University, the sponsor of EPIC-Norfolk has strict information security rules that comply with the General Data Protection Regulation (GDPR) 2016. Please click here to view our latest privacy notice. All data are collected, handled and stored extremely safely.