Cambridge University

EPIC-Norfolk: Participant Panel: Archive of previous meeting summaries: 2013

October 2013

There were twelve participants (including one new member) along with five members of the research team in attendance.

Matters arising from the July 2013 meeting were discussed and all Panel members have now had their 4HC. Panel members had forwarded inclusions for the leaflet given out at the 20th Anniversary meeting on the 10th October and a number of volunteers had manned the EPAP stall on the day- all were thanked for their contributions to the event, which is being considered a great success (see below).

Presentation by Dr Victoria Keevil, Wellcome Trust Clinical Training Fellow at EPIC

Tori gave a very interesting talk on her work on Physical Functioning in the EPIC-Norfolk population. Some intriguing questions generated by her talk were asked by the Panel and Tori spent a significant amount of time answering each one.

Panel feedback on 20th Anniversary meeting

All agreed that it was a very good day. There were some comments and suggestions which were noted for consideration when planning future events.

All who requested a ticket received one and if one only was requested then two were sent anyway, this was seen as an advantage to allow more non-EPIC participants to attend. The Panel were informed that questions and answers received in advance of the event are going to be put on the EPIC website along with the posters displayed on the day.

Thanks were given from the Panel for the organisation and to the speakers for making it understandable, informative and an enjoyable event.

Feedback on 20 year brochure

Panel feedback was that they were very appreciative of the certificates and the brochure content. They also thought the quality and appearance of the brochures was excellent. They also passed on the positive comments they had received both at the 20th Anniversary event and from outside.

Next newsletter

As the current Newsletter is now twelve months old another needs to be produced by the end of November. The Panel provided suggestions for inclusion including progress of the EPIC4 tests and possibly an overview of some of the joint (or individual activity at other European sites).

Future planning

The Panel were informed of the possibility of adding an additional test to the current 4HC. EPAP members were given the opportunity to review an information leaflet and to comment on possible inclusions or omissions. They were asked to forward additional comments for inclusion following the meeting should they wish.

Future meetings

Meeting dates were agreed throughout 2014 and suggestions for talks received including one on statistics and another on nutrition.

July 2013 - AGM

The scheduled talk by Victoria Keevil on physical performance was postponed until the October meeting. Members were informed that Anthony Khawaja, who spoke at the last EPAP meeting about the EPIC 3HC eye data, had won an award for best presentation at the recent Royal College of Ophthalmologists annual congress in Liverpool.

Planning is underway for the EPIC Public Meeting to be held later this year. An EPAP information stand and leaflets will be included on the day.

A press release to highlight the 1000th participant being seen for the Fourth Health Check (4HC) will be distributed to the media in the very near future.

It was agreed that the Chair would continue to co-ordinate the Panel and chair meetings for the coming year and the minute-taker would continue. A Panel member agreed to take on the role of writing a website summary following each meeting.

The Panel structure and membership was discussed. It was considered that the Panel is currently well balanced with regards to skills and a natural turnover of members over the past 3 years led to agreement that here is no need to introduce fixed term membership. Nichola holds a list of reserve members.

A Panel member provided an overview of Panel activity over the past year, covering the activities undertaken by the Panel such as consultation on future study ideas, review of documentation, inviting specialist speakers, being chosen as a group and taking part individually in the RAPPORT study, being consulted on Ethics, Research & Development and Governance issues and providing feedback of the experience of taking part in the 4HC.

Shabina Hayat expressed the gratitude of both Chief Investigators and the entire EPIC research team for the hard work, input and commitment of the Panel. She explained the importance of the work carried out and the benefit not only to the current phase of the study but also the future direction of the EPIC research activity.

Finally, the Panel split into groups to examine sections of the latest draft of the EPIC 20 year brochure. They provided helpful feedback for improving the brochure which is due to go to all EPIC participants during August. The opportunity then presented itself to take photographs to update images used of the Panel on the website and study documentation etc.

April 2013

Present: 11 participants, 3 researchers and 1 member of the EPIC4 clinic staff, 6 apologies.

Two potential new members were welcomed to the meeting and an additional new member had sent apologies to this meeting but will attend the next.

Members enjoyed a very interesting presentation by one of the EPIC research team entitled: The EPIC-Norfolk Third Health Check (3HC) Eye Data. All agreed that this talk was extremely well delivered and very enlightening.

A previous request by members regarding an amendment to study documentation was discussed following advice from an expert in the field and Panel members were also given an update on EPIC permission and consent.

Panel members were informed that a 20th Anniversary brochure will be sent to EPIC participants. Some of the contributions from members forwarded following the last meeting will be included and thanks were given for these. In addition to this, the possibility of a public meeting is being investigated and members will be kept informed of developments.

Panel members who have already attended the EPIC Fourth Health Check provided feedback of their experiences and report that they enjoyed the appointment.

The EPIC research team also thanked members for agreeing to the additional involvement in a study looking at public and patient involvement in research. We are very pleased that Panel member involvement has been acknowledged and that the EPIC approach to involving participants in this way may well influence others to do the same.

An overview of the EPIC activity at the Cambridge Science Festival was then provided and it was reported that the stand had been very busy over the two days.

Finally, members were encouraged to advise the team of any requested items for the agenda at future meetings.

Future meeting dates were discussed.

January 2013

Present: 7 participants, 8 researchers, 4 apologies.

Three members of the Fourth Health Check (4HC) staff in Norwich were introduced to the Panel. The Panel members were also informed of the sad loss of two Panel members.

The Panel were informed that the changes they had suggested have been included in the actigraph results letter going out to participants following their 4HC appointment. Also, as suggested at the last meeting an information sheet explaining results to participants has also been compiled and a copy was provided to members for information.

Professor Kay-Tee Khaw then spoke to the Panel about EPIC permission and consent and an open discussion session followed.

This year marks the 20th Anniversary of EPIC and the research team are planning ways to celebrate the occasion. The Panel were asked for contributions giving a participant’s perspective of taking part in EPIC.

An update of the current activities and progress of the 4HC was given. There are plans for an official launch of the 4HC and a press release planned. Panel members' contributions as detailed above may also be used for this.

Future agenda items were discussed and members requested talks covering the EPIC eye and physical performance data.

Future Meeting Dates were discussed.