Enrique Sánchez de León, president of Fundamed, discusses the role of the voice of the patients, and how they work alongside the General Patient Alliance to strengthen this voice. Furthermore, he highlights the importance of the Fundamed awards as a way to give back to those committed to the healthcare sector in Spain.

Can you please start by giving an overview of Fundamed, its role in the Spanish healthcare sector and how this role has evolved?

Fundamed was created in 2001 in an environment of important changes in Spain’s healthcare sector that affected all the key stakeholders involved. The role of the foundation has always been to manage the difficult relationship between the patient, the patient association and the administration, so we try to optimize this coherence. These patient associations have become bigger and stronger as the years have passed, and they are now recognized as a strong voice in the sector for individual patients. However, because of this evolution, the associations have folded inwards and prioritize the defense of their own interests, sometimes without looking at the bigger perspective.

Historically, these groups were aggressive in their fight with the administration to have their voices heard, but now they can turn to Fundamed as the platform for dialogue in Spain’s healthcare system. Fundamed’s biggest success is aiding this dialogue in an established sector such as healthcare. We play an impartial role in promoting dialogue between the patient associations and the administration, striving to empower the patient whilst looking at the bigger picture of what they do and their needs. Furthermore, we aim to change the perception of the patients, as they should not be perceived as the enemy of the administration but as a strong collaborator.


What are the different relationships you have in the sector?

 In 2009, Fundamed was elected executive secretary for the General Patient Alliance (AGP), responsible for their administrative and functional management. If an association of the AGP wants to highlight a problem or an issue to the government, then we take care of this and become responsible for the process.

Fundamed is seen as the technical actor for the AGP, because we are neither patients nor the administration. Therefore, our relationship with them helps us to fulfill our aim as the benefactors for the patients and the promoters of dialogue. We designed the relationship between the two on this basis, where the patient associations of the AGP know who to contact if they need help with a problem and they can ask Fundamed the important who, what and how questions to fully solves their issue.

What are the main challenges for Fundamed?

Fundamed needs to equally defend all the different pathologies and qualify what is an urgent issue, not only for the patient association, but also for the healthcare sector, looking for the best outcome. In addition to the dialogue we establish, we are also a tool for economic and professional help, because the needs of the patient are often immediate but also expensive. This is our main challenge at Fundamed, to determine which cause or problem we prioritize over another, because every patient’s problem is a priority! We do not always know what is best, but we are proud to highlight and facilitate the dialogue between the key stakeholders.

Furthermore, the government and the administration is regularly changing, and so we need to constantly update them on who we are and what we do, in addition to what we need from them for the patients. We would like to see more action to raise awareness about our issues.

Finally, we would like to see a final system looking at the financing of exceptional circumstances of patient treatment, as currently, the system is improvised. There is no regular attitude from the government regarding expensive drugs, such as those that treat HIV. There is an in-balance of who should receive some drugs and who should not and this is against the idea of Fundamed, as we welcome all different pathologies equally and do not want there to be any discrimination in the sector.

What initiatives does the foundation have in place in Spain’s healthcare sector?

Our main initiative that we have is to identify the research commitments in the sector, from the pharmaceutical companies to the health professionals. This is achieved through the Fundamed and Wecare-u awards, and this year we held our 17th edition. There are several prizes for this award, ranging from the best drug in the market, the best company and the best society involvement. Furthermore, we recognize the achievements or one researcher and one professional whose careers have been dedicated to the healthcare sector. We have an excellent selection system, made up of a jury of 50 key players, such as researchers, doctors CEO’s and journalist that decide on who wins this array of awards.


What are the main outcomes of some of the agreements you have signed to improve the healthcare system?

In Spain, it is widely perceived that the hospitals are stuck in their mindset because although we have some of the best healthcare institutes in the world, we fall behind the rest of Europe regarding our primary care sector. Currently, we do not have the optimum relationship between the doctor and the patient, because today a patient does not have a family doctor, and we see a lot of healthcare professionals changing in the hospitals.

In 2016, Fundamed signed an agreement with the former Minister of Health, Jesús Sánchez Martos, to promote the humanization of the healthcare system and develop common initiatives. It is very difficult to decide what humanizes the healthcare sector, but this agreement was the start for opening up the idea. Some examples of what we agreed on, was to ensure that patients retained their dignity when undergoing operations and that the hospitals in Spain had the correct directions to make access easier for the patients. Furthermore, from this agreement, we wanted to establish a stronger relationship between the doctors and the patient. This remains at the center of our agenda because we feel that the private healthcare system is far more advanced in this area than the public healthcare establishments.

Finally, what are the main priorities for Fundamed over the coming years?

I am positive that a new president can bring forward new initiatives to further evolve the association. I feel that we are the best platform for dialogue, but we are not unique, so we are currently focusing our energy on the present, looking at the awards ceremonies we hold to recognize the achievements in the sector and the different agreements and relationships we can establish.