In order to continue studying cancer and other diseases in the EPIC-Norfolk cohort it is important to collect up to date data on disease incidence and death. To maintain a balanced and well-designed study, this data needs to represent all of the participants recruited into the EPIC-Norfolk cohort, including both participants who continue to take part through attending health checks and completing questionnaires, and those who are no longer able to do so or we were not able to invite back.
It is only by following all of the participants that accurate and valid comparisons can be made when looking at diet and other factors in people who have developed a particular disease, compared to those who have not. Information on health outcomes comes directly from participants through health checks and questionnaires, but also through health records linkage with the appropriate local and national organisations. The health record linkage allows all participants to be followed, regardless of which health checks they have attended or which questionnaires they have completed.
EPIC-Norfolk has the necessary approvals in place to allow linkage to health records. This includes explicit consent from 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. The latest privacy notice can be found here.