EPAP advisory group bond in Brussels

Summary of EPAP patient advisory group meeting - March 2018

Members of our EPAP patient advisory group came together in Brussels to exchange ideas and share experiences of healthcare, the role of patient ambassadors in their countries and why patient participation is important.

Attendees came from Bosnia and Herzegovina, Ireland, Spain, Ukraine, the Netherlands and the UK and although different healthcare services and experiences varied, the patient experience was found to be very similar in many ways. The chance to talk about challenging situations and share good practices with each other was valued.

Issues discussed:

• Changing training needs of patient ambassadors: discussions ranged from the changing technological climate with increase in online training courses, webinars and apps for patients. The group welcomed many of these new innovations whilst noting that information sharing and rights for individuals is becoming increasingly important.
• The language that researchers use needs to be fully understood by patients in order for them to be meaningfully involved.
• The importance of including mental health within EPAP due to its impact on people with most conditions.

Improvements for EPAP:

• Add more real-life experiences through videos/visuals and more links.
• The term ‘ambassador’ may feel intimidating to some people so add more clarity about what this means within the programme.
• Manage learner expectations better from the beginning.
• New information could be included on ‘Influencing change in your country’ as well as more advanced signposting section with links to other courses, knowledge and resources for those wanting to continue their learning after EPAP.

Learner statistics from EPAP modules, website and newsletter were analysed along with user feedback:

• EPAP learners come from 42 countries
• 75% are linked with non-respiratory conditions

"It was an amazing meeting. I met a lot of people full of positive energy and I learned a lot of new things which can help me in my country."  [Meeting participant]

The ELF team will be making some of these improvements to EPAP over the coming months. If you have any other suggestions for improvements please email jeanette.boyd@europeanlung.org