Cambridge University

EPIC-Norfolk: Participant Panel: Archive of previous meeting summaries: 2018

April 2018

There were eleven participants and five researchers at the meeting on Monday 23 April 2018.

Matters arising from previous minutes.

A new 5HC research assistant is now in post and contributing to recruitment. The talk that three EPAP members were to give to the NCHC board in February was cancelled because of the bad weather and we are currently waiting to hear if a new slot is available.

Re January 18 meeting.

Prof. Kay-Tee Khaw provided more information and clarification of the discussion points raised from the INVOLVE conference feedback.

Presentation on Nutritional Assessment.

Marlene Lentjes, (Senior Research Nutritionist, EPIC-Norfolk Study) gave a presentation on methods of Nutritional Assessment. The four different elements of nutritional assessment are Anthropometry, Biomechanical, Clinical and Dietary assessment. In EPIC lots of dietary assessment methods have been used. Food diaries require a huge amount of data entry so the Food Frequency Questionnaire (FFQ) is being used. Advantages include that this is the fourth time participants would be completing it, comparison over the years is straightforward, it is easy for participants to complete and data entry is quick and is straightforward. Disadvantages include that FFQ has had no changes but food supply has changed, seasonal variations and overestimation. A solution to overcome the problems of seasonal variation and overestimation with the FFQ was to use TADA (technology assisted dietary assessment) which EPIC has received permission to use. Diet is more than just the food eaten; it is attitude, other's influence and perceived control. To capture other behaviours relating to diet, specific questions were included in the stand alone questionnaire sent to all remaining EPIC participants in June 2017.

EPAP Terms of Reference (TOR).

A draft TOR has been produced and distributed taking into account the INVOLVE guidelines, along with panel discussion and requests from the previous meeting. The final version will be reviewed by the EPIC management committee and included on the EPAP page of the EPIC website.

Fifth Health Check update.

The Norwich team is currently working extra hours to maintain 5HC numbers. The clinic is currently at full staffing levels and the response rate from participants is holding steady. Participants who attended a 4HC appointment have recently been returning for a 5HC.

The future of EPIC.

At present EPIC has two Principal Investigators (PI), Prof Kay-Tee Khaw and Prof Nick Wareham. Prof. Khaw will retire at the end of this year and Prof. Wareham will take over the running of the EPIC study. Further Information on the future direction of the study will follow in due course.

EPIC 25th Anniversary Event.

There will be an EPIC-Norfolk 25th Anniversary event held in Cambridge.

Suggestions for future meetings.

It was acknowledged that the panel would still like a talk from a member of an ethics committee.

Future meeting dates.

The EPAP AGM will take place in July 2018 and future meeting dates will follow in due course.

January 2018

The meeting was attended by eleven participants and five members of the research team.

Matters arising from previous minutes

Web-Q feedback presentation will now take place at the April meeting. The NICE guidelines for glaucoma referral have been revised based on the paper published on the EPIC 3HC eye data. 5HC- difficulty in recruiting staff since July. However, a new research assistant will start end of February. Links to papers published using the EPIC psychological health questionnaire data have been added to the previous meeting minutes as requested by panel members.

INVOLVE conference

Two people, an EPAP member and EPIC research nurse attended the conference in November 2017. The subject under discussion was patient and public involvement in research. The panel member reported that there was a vast amount of information available and a summary report was presented today.

This discussion session highlighted a number of questions regarding the panel involvement in EPIC and what they perceived their role to be. The panel had already contributed in many areas, including various questionnaires, some of which were redesigned following panel input. Panel member comments are extremely valued and have had a huge impact on the study. The majority of Panel members felt that their past involvement and impact on decision making processes should not be underestimated. Panel members see themselves as representatives of all EPIC participants i.e. their voice.

When the panel was formed in 2010 it was unusual to have a panel involvement in most research and the PPI initiative has developed significantly in the past few years. EPIC is atypical of other studies due to its size and longevity. However, there is room to develop the panel and the suggested collective panel approach to a Terms of Reference (TOR) document could be an important first step. Members are happy with the current approach to PPI and with the current level of commitment/involvement.

EPAP terms of reference (TOR)

These are needed to formalise EPAP activities and to assist with its continued future functioning. The panel were provided with two example documents, one for the monthly EPIC internal progress meetings and a template terms of reference from the INVOLVE website. Members were asked to work on how templates such as these could be applied to EPAP. Comments received will be used to draft a TOR template for discussion at the next meeting.

Possible social outing

Some ideas for dates and locations were discussed.

Agenda items for future meetings were also put forward for consideration.