The EPAD panel set-up drew upon the experience of the PREVENT Dementia Study (23). Key features of the EPAD participants’ panels included a nested panel structure, in which multiple panels function locally and independently (Figure 1). Individual members or small teams of members of these panels then formed a single study wide panel. This central panel met once a year, alongside the General Assembly of the project. Local meetings were chaired by participants rather than staff. The central panel meeting was chaired by the EPAD Ethics group and was closed to other members of the consortium unless specifically invited by the panel members.
The central panel meeting had two main goals – to co-ordinate activities across the local panels, and to provide for direct participant input into the development of the study. Participation in the General Assembly has also provided the opportunity for participants to learn about the progress of the study and to provide feedback, through both plenary meetings and closed meetings chaired by the EPAD ethics workgroup. Two meetings of the central panel have taken place, in 2018 and 2019, with six and ten members respectively. In addition, one participant representative attended the 2017 project General Assembly.
In addition to meetings of the central panel, participant panel members have also contributed to the planning of the future direction of the project as it approaches the end of its initial funding. Participant panel members from two EPAD countries worked with the research team in planning for the sustainability of the project and the long-term use of EPAD samples and data.
Each country was given a mandate to establish participant involvement on either a research centre or country level in the form of a panel. Whilst the common language spoken at the central panel was English, requiring a certain level of ability to speak English, the local panels facilitated multi-lingual involvement with participants. A terms of reference document was created as a guide for research teams (Appendix One), however these terms could be adapted as appropriate to meet local requirements and based on discussions with local panel members. We describe below the set up and running of the panels with commonalities first described, followed by any unique adaptations made:
In Scotland there was an established centralised country wide panel, with membership from four recruiting centres (NHS Lothian, Grampian, Greater Glasgow & Clyde and Tayside). The choice to form one country wide panel was advocated for by the participant members and worked well in a geographically small country.
England: OXFORD, WEST LONDON AND BRISTOL
England similarly established a panel to represent participants from multiple centres. The panel ran from Oxford, England and involved participants from three centres (Oxford, West London and Bristol).
The Netherlands: Amsterdam
The panel in the Netherlands was housed at the VuMC (Vrije Univercentreit Medical Centre). As there was only one centre in the Netherlands this panel operated both as the country and centre wide panel.
France had one panel in operation, based and run from the Toulouse centre. As one of the largest centres in the EPAD study Toulouse was able to harness the participant voice onto this panel.
Spain’s panel was in Barcelona, the first EPAD centre to open in Spain.
Establishing the panels
The panels were in operation for a range of time, with the Scottish and Barcelona based panels established in early 2017, and the newest panels, England and Toulouse, established in 2019. All panels have met at least twice at the time of this paper.
Panels employed a variety of recruitment methods, with equal levels of success, during the initial set-up period. Three panels (Scotland, England and Toulouse) contacted all local participants via letter or email to explain that a participant panel was being established and asking for interested participants to contact the coordinating centres to receive more information. In Amsterdam the panel was first introduced during an annual meeting for participants, to which all EPAD participants were invited, and the panel opportunity was followed up during the dissemination of minutes from this meeting. In order to maximise the engagement of the participants and the output of the panel, the team in Barcelona established a list of criteria for the selection of the potential panel members such: proximity to the centre, sex, age, English language level, motivation. These were participants who had previously expressed interest in being more involved in the study and each participant was contacted by phone to assess interest in joining the panel. Most panels enrolled people on a first come first served basis, with the exception of Toulouse which enrolled based on longevity in the EPAD study. At the time of the cohort study closing a waiting list was in operation at the Scottish, English, Toulouse and Barcelona panels due to levels of demand. New recruits were informed about the participant panel using flyers in Scotland and via email in Barcelona, whilst Amsterdam elected to maintain a static panel as the participants involved have the most experience of the EPAD study and were motivated to remain in the panel. Scotland is a unique example in this group as it was initially established as an Edinburgh based panel and had since expanded on the advice of the panel members to include participants from all Scottish centres.
The initial meetings of each panel involved similar agendas set by EPAD staff, with setting the scene and explaining the purpose of the panel, establishing rules of engagement around confidentiality and terms of reference for the panel, and nominating a participant as chair of the panel. At the Barcelona and Toulouse panels, a vice-chair was also selected to support with the leadership of the panel.
Logistics of running the panel
The panels were all set up to run twice a year, with ad-hoc contact in between for matters arising that are time sensitive. The Barcelona panel met up to 4 times a year on the request of the participant panel members. Numbers of panel members ranged from 7 at Amsterdam to 12 in the Scottish panel, with the group size aimed to be large enough to capture a diversity of experience and opinions, whilst remaining small enough to allow everyone time to meaningfully contribute to the meetings. EPAD study staff were in attendance at every panel meeting, and in most centres the Chief Investigator or Principal Investigator also attends. The staff attended to organise the logistics of the meeting, provide study updates and answer specific questions from the panel, facilitate discussions if required and to minute the meetings. Panels met at locations convenient for participants, travel expenses were provided alongside refreshments, be that coffee or lunch depending on the preferred time of the meeting at each centre. Communication varied between countries depending on formats allowed under data protection laws, and included email, post and closed WhatsApp groups.
Content of panel discussions
The content of panel discussions was led by structured agendas which are developed by the panel chair and members with the support of EPAD study staff. As an example the Scottish panel had standing items discussed at every meeting including dementia moments (recent news stories about brain health and dementia), an update on the study progress to date (both internationally and for Scotland) and the proof of concept trials. Other topics discussed in the panels include sustainability and longevity of the project, communicating about EPAD, feedback on study visits (including experiences, practicalities and logistical aspects), reviewing documentation and discussing personal views on receiving desirability of receiving feedback through the EPAD study on risk factors for dementia.