European Federation of Neurological Associations
Training initiatives for neurology advocates
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EFNA´s Training initiatives in SPAIN
The 26th 27th of October 2017, the European Federation of Neurological associations develop together with the support of Elena Ruiz de la Torre, president of European headache alliance, an extraordinary Training initiative for Neurological Associations in Valencia ,Spain.
This event took place in “ Campus Diversia”, Yátova, Valencia, Spain, a place where job training and environmental employment is fostered. An inter-university collaborative project to enhance the capabilities of people. A perfect place for the occasion.
30 different national patients organizations from all around Spain, learning about HTA and Communication all together.
Different topics were met, such as an introduction to pricing access and reimbursement, the importance of the implication of patients in HTA, how medicines are approved in the EU, Best practice multi-Stakeholder collaboration in influencing the regulator and payor decision-making, the EMA process of medicines approval, and much more.
In the afternoon session, Mr, Denis Costello, a communications specialist talked about how to optimised social media to influence
Decision-Makers. How Social Media help the organizations to raise awareness and reach existing and new audiences, and also how they help to generate and disseminate evidence.
Each and every one of the participants in the workshop agreed that there is still much to be done, and a long way to go to join forces and be heard.
They have a significant lack of information, to understand well the process of approval of medicines. In which ways are patient associations involved in these processes.
It is true that in Spain, there are many discrepancies regarding the medicines that are financed in the different autonomous communities, so that medicines that are financed in certain communities may not be in others.
In addition, this situation can be aggravated even within the same city as it was revealed that for example in the city of Seville there were hospitals that provided a certain treatment and other hospitals that did not provide such treatment.
We have found that there is a lack of communication strategies from part of the organizations, a lack of knowledge about what to address and how to do it, and a general ignorance of the life of a drug until it is approved and marketed. It should also be noted that many people did not knew the meaning of HTA.
As an overall, all the attendees found this workshop very interesting and very useful because they were provided with information they lacked.
Now, with all the information they have, they can fight better for the rights and interests of their patients.
Even more, they were very grateful to have felt part of something, part of Europe. To know that there are organisms that speaks and listens on behalf of them. Everyone felt it was a really worthwhile initiative!
