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Kerstin (ELF), Betty, Kjeld, Matt and Tessa

First face to face meeting for Patient Advisory Group (PAG)

On 23 March members of the PAG came together for the first time to meet and to discuss the way forward for EPAP. Betty from the Netherlands, Kjeld from Denmark, Matt from Ireland and Tessa from the UK travelled to the offices of the European Lung Foundation (ELF) in Sheffield, and Toni from Scotland, Joanna in Belgium and Emma from Canada joined via Skype.

Based on their own experiences, the members discussed how to interest a wide spectrum of people in taking up EPAP and how to keep ambassadors engaged once they have finished the modules they chose to complete.

We also talked about the expectations people had in the programme and about what motivates people to study EPAP to better understand and appreciate the different levels of involvement, ranging from people who complete modules to simply be better informed, to people, who want to be involved in a patient organisation, or a campaign or, who want to be involved in research itself, others still may want to change healthcare policy at national or even European level.

This was key to deciding on the best way to promote EPAP and which forums to offer ambassadors to exchange their ideas and experiences. Other things discussed were resources, the new module and further languages.

The discussions were lively and, as expected, the day was not long enough to talk about everything. Everyone felt it was a positive day and that it was a great experience to meet the others.

We will publish the report from the meeting on the EPAP website shortly.