Annual Report 2017

Meet and Greet

The 10 participants to the 2017 learnt from and discussed with Health Technology Assessments professionals to ensure patients are involved in HTA processes at national level.

austria

From left to right: Capacity building sessions with FFAAIR (French Respiratory patients’ association), Astma en Allergie Koepel (Belgium Asthma and Allergy Association) and Österreichische Lungen-Union (Austrian Lung patients Union).

EFA Meet & Greet the EU training

Every year we invite patient advocates from our network to learn more about the functioning of the EU institutions, understand what is at stake in the EU policies under discussion, and influence their Members of the European Parliament (MEPs) to adopt decisions embracing patients’ needs. In 2017, 10 advocates from 7 EFA Members deepened their understanding about how patients can be involved in Health Technology Assessment (HTA) procedures. Participants heard from the European Commission, national regulatory bodies and patient representatives, who covered the sustainability of health systems financing, efficiency and HTA, national examples involving patients and the challenges, implications and consequences at EU level. They finished the training with a role-play where they simulated the points of conflict usually found between patient representatives, industry, payers, decision-makers, and healthcare professionals when involving patients in HTA decision- making.

Meet&Greet was an educational meeting/seminar very well arranged with good and knowledgeable speakers. We are part of the European Economic Area and we feel it is relevant to be able to compare experiences with others. For us, the training was especially useful to meet people and exchange with other EFA Members who are working for similar objectives as ours. It's valuable to be part of such a network for our own development.

Dace Kalëja and Guro Waage, Norwegian Asthma and Allergy Association

EFA capacity building programme

One of our main objectives is to help members improve their work for patients at national level and through EFA. We do this through capacity building workshops, where we present and discuss ideas to develop a stronger association through a better volunteer, finance and advocacy basis, and to raise awareness about the diseases they represent.

In 2017, our members Fédération Française de Associations et Amicales de malades Insuffisants ou handicapés Respiratoires (France), Astma en Allergie Koepel (Belgium) and Österreichische Lungen-Union (Austria) benefited from this project. We helped train 30 patient advocates to plan impactful projects for patients, to look for new fundraising opportunities, to discuss how to involve and motivate volunteers in the regular organisation’s activities, and to engage in external communications with the media and through social media. We also allow an exchange of experiences and transfer of knowledge between EFA members by inviting some patient representatives to share their success stories.

seal

EFA’s capacity building session was very important for our association because we improved our knowledge around very useful subjects like relations with the media, how to communicate with different partners, how to develop projects to improve physical activity, patient expert education and our approach in the struggle with tobacco. FFAAIR has already applied the things learnt in several 2018 Congresses in Lyon, Nantes and Paris, because we organised sessions on physical activity, communication between healthcare professionals and patients with severe illness, pollution problems and help for tobacco smokers. Liliya Belenko, FFAAIR - Fédération Française des Associations et Amicales de malades Insuffisants ou handicapés Respiratoires.

Our ability to compete for the challenges of tomorrow depends above all on our ability to provide the necessary human and financial resources. Antje - Henriette and Giuseppe showed us how to win the best people, to keep them, to cultivate a creative environment and to find new ways to innovative fundraising. For us it was an extremely valuable day. Thank you! Otto Spranger, Lungenunion Austria