The EPIC Participant Advisory Panel met in Norwich on Monday 22 July 2019. There were eleven participants, three researchers and one visiting researcher present. The panel welcomed three new participant members to the meeting.
Briefing documents relating to a rheumatoid arthritis case ascertainment project had been circulated to panel members prior to the meeting for their consideration.
The panel members agreed that it was vitally important to carry out case ascertainment projects such as the one presented, to ensure that the EPIC-Norfolk dataset remained as up-to-date as possible for health outcomes. There was a general feeling that participants provided their data and samples freely for medical research purposes and would want their health outcomes followed up through routine record linkage and case ascertainment such as in the rheumatoid arthritis project. The panel did not have any underlying concerns on the sharing of NHS numbers and feel that their personal information is being adequately protected.
Presentation on the sharing of data and results.
Professor Nita Forouhi gave an interesting talk about the sharing of data and results generated from the EPIC-Norfolk Study. EPIC-Norfolk has collected rich data from around 26,000 participants over a period of 25 years and she emphasised how significant the data collected was for understanding determinants of health. EPIC-Norfolk data are an important resource for the wider scientific community other than EPIC-Norfolk researchers. This allows others with expertise beyond those within the immediate research team and ensures maximum use of the data that can eventually be of benefit to patients and the wider public.
Professor Forouhi reported that EPIC-Norfolk data has been used in over 800 scientific publications and also in Masters and PhD dissertations. It has shaped scientific understanding for health, medicine and social factors and helped underpin research for public health and policy. One example has been analysis of the consumption of sugar-sweetened drinks in children and adults which led to the soft drinks industry levy.
Future meeting dates.
The next EPAP meeting was planned for Monday 28 October 2019.