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 to104, 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 of SomaLogic will discuss the appropriate use of stored samples and data in public-private partnerships.
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.
The meeting of the panel on Monday 28 October 2019 was attended by ten participants, three of the research team members and two visiting researchers. Following Professor Kay-Tee Khaw’s recent interview about healthy aging on Radio 4’s Women’s hour, a BBC TV crew came to film the first section of the meeting and also interviewed two participants and one of the researchers. A short item was broadcast on BBC Look East in the following days.
Appropriate use of stored samples and data in public-private partnerships
Dr Claudia Langenberg, a group leader at the MRC Epidemiology Unit and Honorary Consultant Physician for Public Health England, gave an informative presentation about the appropriate use of samples and data in public-private partnerships. She explained how the EPIC samples were helping us to better understand the genetic basis of a wide variety of diseases.
The importance of preserving the 25,000 EPIC-Norfolk samples was explained and also the need to use these appropriately. EPIC-Norfolk samples are an extremely valuable resource to investigate a large range of blood biomarkers with many different diseases at the same time. Through dramatic improvements in various technologies it is now possible to instantaneously measure thousands of these macromolecules from a single blood sample. In turn this helps us to better understand the genetic basis of a wide variety of diseases.
It was agreed that four dates should be provisionally arranged for 2020 but meetings should only go ahead if it was thought to be useful and not for the sake of having a meeting. Topics suggested for future meetings included that PhD students using the EPIC-Norfolk data could come and present their work to the panel. It was also suggested that EPIC collaborators could be invited to present updates on their research. An additional area requiring the panel’s thoughts is the development of a newsletter to the EPIC-Norfolk participants or a possible public meeting.