The EPIC Participant Advisory Panel met in Norwich on Monday 4th February 2019. There were twelve participants and four researchers present. No apologies.
Matters arising from previous minutes
Dates of 2019 meetings circulated to the panel members and bookings made at the Assembly House. Gwen Brierley confirmed that the Chair of the Cambridge Ethics Committee, Dr Alan Lamont, has agreed to talk about the role of the Ethics Committee at the next EPAP meeting.
Update on the EPIC team
Abigail Britten was introduced to the panel, Abi is the new data manager with the EPIC team. Connor McMenamin, a data engineer has also joined the team and will be managing the transition of the EPIC database to the MRC Epidemiology Unit, working closely with Robert Luben. A study coordinator role has been advertised and will be introduced to the panel at a later meeting.
Review of the Terms of Reference
Agreed that this item would be discussed at the next meeting.
Update on EPIC Science
Professor Nick Wareham presented on the latest research happening with EPIC data and the role EPAP can play as the ‘voice of the participants’.
Professor Wareham explained there would be a shift in collecting new data direct from participants to maximising the value of data and samples already collected by linking it to information held in medical records and NHS registries.
Professor Wareham presented on the genetics and ‘OMICs’ work, explaining how the EPIC samples were helping us to better understand the genetic basis of a wide variety of diseases.
Professor Wareham raised a question about the genetics work potentially yielding results that could predict future disease trajectories in individuals or their family. This was to demonstrate the sorts of ethical questions the research team would really value EPAPs views on. To date, the research team have been clear that these sorts of results would not be fed back. This is in part because the information provided can only ever be a probability rather than a certainty.
Professor Wareham briefly presented on a second topic – open access to research data. It would be extremely helpful to get EPAP’s views on how best to share the EPIC data with the wider research community and if there are any controls/limits they would see as essential.
Several members were interested in finding out how many from the original cohort had died. Abi believed we should be able to pull this information from the study’s database.