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.
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.