Kerstin Morrison – ELF Betty Frankemölle - EPAP ambassador and member of Patient Advisory Group Amanda Roberts - EPAP ambassador and member of Patient Advisory Group

Patient involvement needs to be effective Patients and carers need to have skills and knowledge to make their involvement effective EPAP is the tool for well trained patients It is a free, online self-learning programme For any condition

Skills and knowledge for effective patient involvement through different modules: Becoming better informed Improving public awareness Improving treatment and care Supporting research and development Influencing policy Working with the media Becoming involved in a transnational research project

The website and registration

Registration/Log in

Choose your modules

Interactivity

Case Studies

Downloadable and printable content

Resources Links to websites within the programme Resources section on the website

Posting of opportunities on the website, Facebook and LinkedIn Languages: English Dutch Italian

Many organisations in and outside of Europe promote EPAP to their members

Betty Frankemölle Volunteer with Longfonds, patient expert Worked for many years as a paediatric nurse in neonatal Has severe, difficult to treat asthma Member of the patient advisory group for EPAP Has helped with promotion of EPAP in Dutch in the Netherlands through a national umbrella organisation for patient to organisations Was recently involved in an IAPO EU project through EPAP

Betty “In April 2013 I was asked to try the new online training programme for patients and carers. I became enthusiastic. On the first hand it looked very simple, but by following the questions it all appeared to be very helpful for a better coping with my own diseases: not only for my asthma but also for my intestine problems.“

Betty “EPAP helped me to make a progress in the quality of my voluntary work for the Dutch Lung Foundation. I gained more knowledge among other things about research decision making. I also gained more self-confidence in doing my voluntary work.”

Amanda Roberts:

It depends on how you wear your hat

Health skills Friends and family skills Cultural skills

24/7 Service reality Multi-morbidity

An imperfect world Job skills Non medical solutions

Community life Colour can matter Young and old

We all need champions Diversity and validity Nothing to me without me

wwwEPAPonline.eu Kerstin.Morrison@europeanlung.org