Introduction to the break out sessions & case studies presentations
- 1. EUPATI workshop, Dublin, 23rd April 2015 EUPATI in Spain Done, doing, to be done
- 2. Done Spanish NLT working until 2013 Four partners: GEPAC, FEDE (patients); Universidad Complutense (Academia); Farmaindustria (Pharma industry) GEPAC: Spanish cancer patients group FEDE: Spanish diabetes patients federation Universidad Complutense: The main university in Spain Farmaindustria: National Trade Association of the Spanish based pharmaceutical industry Some changes suffered in the NLT members during 2013.
- 3. Done Launch of the Spanish ENP Key moment: The appointment of Laura Kavanagh as ENP coordinator in EUPATI consortium. First step: presentation event of EUPATI in Spain 04 November 2014: Event in Madrid with around 100 participants representing patient organizations and pharma companies In the event, Concha Prieto, from AEMPS, the Spanish medicines agency, delivered a speech on patient involvement. Vídeo of the event.
- 4. Done Launch of the Spanish ENP Second step: contact with the Government Two meetings: During 2014, members of the NLT hold two meetings with representatives of the Spanish Health Ministry. In July, second meeting with Paloma Casado, vice-Director in the Health Ministry, in charge of relations with patients organizations. In our opinion, they are still not ready to engage with EUPATI until they learn more about the role of industry and the influence on patients within the project.
- 5. Done Launch of the Spanish ENP Third step: creation of an Executive Board to manage the ENP December 2014: Meeting with all the entities interested in EUPATI. January 2015: First meeting of this Board, with 9 organizations: 6 patients associations, 2 representatives of academia and 1 member from the pharma companies. GEPAC FEDE Conartritis Lupus Madrid Menudos Corazones ACCU Universidad Complutense de Madrid Hospital Sant Joan de Deu de Barcelona Farmaindustria
- 6. Doing Spreading the news Activities in 2015: Rare diseases event in Hospital Sant Joan de Deu in Barcelona (27 February) 8th Annual Conference of Biomedical Research hosted by Farmaindustria in Madrid (24 March) EUPATI training course meeting in Barcelona (1 April) SEMERGEN congress in Toledo (April) R&D Pfizer forum in Madrid (April)
- 7. Doing Programming our activity The Spanish ENP is developing an action plan with three axis: Contents. Developed by EUPATI or by third parties but aligned with EUPATI objectives. Activities. Thinking of new educative initiatives and organising events. Communication. Spreading the news vaa mass media and social networks (twitter, facebook, etc…).
- 8. Doing Working with stakeholders EUPATI is collaborating with two pharma companies (MSD and Novartis) to participate in educational activities during 2015. Some more companies are interested in future joint ventures. The ENP is going to ask AEMPS (the Spanish medicines agency) to collaborate in future informative and educational activities. This can be a more effective way or working together with de Government, better than the Health Ministry. The two main patients organizations in Spain (Foro Español de Pacientes and Plataforma de Organizaciones de Pacientes) are represented in the ENP and informed about EUPATI activities in Spain.
- 9. To be done EUPATI training course Just one Spanish student in the on-going course: Begoña Nafría, also member of the ENP. She will be the first EUPATI tools teacher in Spain. 20 Spanish candidates for the second edition of the course. Waiting for the publication of EUPATI course material in English. The team will then look into how this might be used in Spain, and whether these materials could be translated and used to mobilise patient organisations and organize trainings in Spain, hopefully together with AEMPS, the Spanish Medicines Agency.
- 10. To be done EUPATI toolbox Waiting for the first educational contents provided by EUPATI before the end of 2015. Trying to hold a main event at the end of the year to present these materials. It could be the second annual EUPATI workshop in Spain, after the first one in November 2014 which launched the National Platform.
- 11. New landscape New regulation in Spain (probably approved this June) will allow patient advocates to participate in ethics committees, in the design of clinical trials and in the writing of therapeutic recommendations. EUPATI objectives, training and contents will be crucial in these new areas of the therapeutic innovation process, where researchers, patients, industry and authorities will have to collaborate all together. The Spanish ENP will be ready to disseminate the EUPATI materials and to collaborate in this new paradigm