The EPIC Participant Advisory Panel met in Norwich on Monday 29 April 2019. There were nine participants and three researchers present. Three participants has sent their apologies for not being able to attend.
Update on the EPIC team.
Nicola Kimber was introduced as the new study coordinator with the EPIC team. She will now be coordinating the EPAP meetings and will be the panel’s main point of contact.
Matters arising from previous minutes.
It was felt that the content of meetings need more focus and that future meetings should have a clear topic brief to be provided in advance, salient points to be broken down to aid understanding and guidance on where EPAP’s contribution would be most valued. The views of the participants were sought in relation to a potential partnership with a commercial company (Somalogic). This would provide an opportunity to look at the way genes influence how proteins are produced in the body. This topic will be addressed at a future meeting. Abigail Britten informed the group that mortality figures for the original EPIC-Norfolk cohort (30,445 participants) stands at 40%. The committee were quite surprised by this figure. For the first phase of recruitment, the age range was between 39 to79 years. Considering that now the age range for those recruited participants is 64 to 104, this is not really a surprising figure.
Presentation on ethics.
Dr Alan Lamont and Dr Niki Bannister were welcomed to the meeting. Dr Alan Lamont is a retired oncologist and chair of REC Cambridge East and Dr Niki Bannister is a retired Hospital Doctor and chair of REC: Essex. She also has a keen interest in PPI.
Research Ethics Committee (REC) members are volunteers who review research taking place in the UK from an ethical viewpoint, protecting patients and the public while promoting good ethical research. Each REC meets up 10 times per year with meetings spread out equally during the year. At a meeting they will review around 4 or 5 applications. At the meeting the committee would concentrate on material ethical issues, review the statutory requirements and also offer help and support to researchers over things such as if the Participant Information Sheet could be made more engaging
The committee will decide whether an application is approved (with or without conditions), provisional, or declined. If an application is approved, the researcher can then go ahead with their research project. Most commonly, a project will receive a provisional opinion but may then be requested to modify or provide further information at a later stage.
Dr Alan Lamont encouraged the group to observe a REC meeting. He was very enthusiastic by the work the panel has done so far and would be keen for members of EPAP to present at an HRA National Chair’s Training Day.
Review of Terms of Reference.
All agreed that designing research questionnaires should remain as a point that EPAP is consulted on. Dr Lamont also pointed out that if a questionnaire was submitted to the REC which had not been reviewed by a PPI panel beforehand it would not be approved.
Core participant membership structure to be changed to between 10 to 16 (maximum) EPIC-Norfolk participants. At present members of the panel as number had dropped to 11. As there is a pool of approximately 15 participants who have expressed an interest in joining the panel, it was agreed that 3 new members would be invited to attend the next meeting, to see whether this is something that they would like to be involved in.
Designated EPAP officers would be a panel coordinator (study co-ordinator), a meeting chair (elected) and a website summary writer.
Future meeting dates.
The next meeting will be on Monday 22 July 2019 when there will be a talk by Professor Nita Forouhi on the sharing of data and results that have been created by the EPIC study. On Monday 28 October Dr Claudia Langenberg will discuss the appropriate use of stored samples and data in public-private partnerships.