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Patients require greater participation in biomedical research and development to add their experience and improve outcomes


Date Posted: 1/17/2019 4:55:39 PMCET


More than twenty representatives from various Spanish association patients have called for greater participation in biomedical research and development to "add their experience and improve results", highlighting the importance of promoting research into new drugs.

Among them, President of the Platform of Patient Organizations, Carina Escobar, ensures that the investigation of new therapies is "fundamental" to improve the quality of life of patients and that they "can work or study and have the same opportunities as other citizens." Director Acción Psoriasis, Santiago Alfonso, believes that "patients put all their hopes into the investigation."

Regarding the importance of promoting biomedical research and development, Pedro Carrascal, Director of Multiple Sclerosis in Spain (EME), understands that "research in Spain allows access to treatment." Nuria Pérez, head of the Duchenne Parent Project Communication, Spain, and mother of a patient, says "research is vital because it saves lives for the development and welfare of society as a whole."

In this regard, the Vice-President of the European Association of Patients with Psoriasis (Europso), David Trigos, states that "drug research and development must be one of the legs on which the future is not based, but the Present of this country."

"Patient must be a protagonist from start to finish" in drug research and development, according to Andoni Lorenzo, president of the Spanish Patient Forum. "It is important to have patients' opinion, because they are the ones who know the disease better," said Eva Pérez, President of the National Federation of Patients and Liver Transplants (FNETH).

In the same sense, Rosa Masriera, director of the Multiple Sclerosis Foundation, believes that "the role of the patient must be very active, so you need a lot of information and access to the results of clinical trials and the whole process." The protagonists of the patients and "in a team of research teams", Apostle Jesus Rodrigo, executive director of the Spanish Confederation of Algemene and other dementia associations (CEAFA).

Patients should guide the researchers to what is very important to them, said ALCER General Director Juan Carlos Julian, that all the results we can incorporate will help both researchers and those affected. Together with the rest of the patient group representatives, they were interviewed during the Somos Pacientes in December.

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