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Parliamentarians, health care professionals and associations defend the need for patients to actively participate in the public sphere in Spain

18:03 Farmaindustria
FARMAINDUSTRIA remarks that patients are the raison d'etre for those who are part of the health care system

Madrid, December 13, 2017.- The intensity and quality of the participation of patients in the public sphere in Spain were the main subject of debate during the We Are Patients Conference V, which was celebrated this Wednesday, 13th December, in Madrid. Spanish MPs from the main political parties, health care professionals and representatives of associations and patient organizations, agreed to defend the need to improve and enhance the mechanisms of participation of this group not only within the health system but also within political life and society in general.

The meeting, held in Madrid, was opened by Humberto Arnés, FARMAINDUSTRIA’s Director General, who ratified his conviction, and that of the entire pharmaceutical industry, by saying that, “patients are the raison d’être for all of us who perform a function within the health care system.” Therefore, the sector tries to maintain the best possible relationship with this group and establish with it, “a dialogue that we want to be open, constructive and honest.”

The experience of the patients, according to Arnés, “is increasingly relevant throughout the life of the medicine”, from its research through to its actual use. “Clinical research cannot be carried out without the active participation of the patient in the design of the trial or their presence in the bioethics committees,” he said. “Along this line,” he added, “it makes more sense that the patient also participates in the choice of treatment, in order to ensure the best possible adaptation and effectiveness.”

For all this, explained Arnés, FARMAINDUSTRIA maintains a clear commitment to collaboration with public administrations, health care professionals and patient groups that is not only evident in initiatives directly addressed to them, such as the day itself, awards or the online platform Somos Pacientes, but

Farmaindustria’s Director General, Humberto Arnés

also inspires more important initiatives such as the Collaboration Agreement with the General State Administration, which helps to guarantee the sustainability of the health care system and access to the most innovative medicines, or the Treatment Adherence Plan  which aims to combat the challenge of lack of patient adherence and thus improve the efficiency and quality of health care provision.

Two talks and a practical workshop

Divided into three segments, the conference sought to address and draw conclusions about patient participation. To begin with, a round table regarding health care matters was held amongst Spanish MPs from the three main political parties currently being represented in Congress; Teresa Angulo (Partido Popular), Jesus Maria Fernandez (PSOE) and Francisco Igea (Ciudadanos).  They joined the Presidents of two large patient groups in Spain; Tomás Castillo (Platform of Patient Organizations) and Andoni Lorenzo (Spanish Forum of Patients).  Alogether they discussed that, if the policy were to listen to the patient and their associations, what could the vision of this group contribute to the political decision making in health care matters and how could the voices of the patients be better articulated within this area.

Following this, Jorge Garrido, Secretary General of the Spanish HIV/AIDS Coordinator (Cesida), and Pedro Carrascal, Director General of Multiple Sclerosis Spain (EME), moderated by Mercedes Maderuelo, Manager of the Spanish Diabetes Federation (Fedesp), talked about the past, the present and the future challenges of the social activism of patient movements in this country.  Finally, a workshop was held in which four experiences were exposed, in detail, showing how the participation of patient organizations in different areas of the health care management system adds value and improves both user experience and the practice of the health care professionals and the efficiency in the use of Spanish health care resources.

Humberto Arnés with Spanish MPs and Representatives of Patient Organizations

The Conference, held in Madrid, was attended by two hundred people, mostly representatives of patients’ associations and people with disabilities, as well as professional groups, health care administrations and pharmaceutical companies, and under the chairmanship of the Secretary General at the Ministry of Health, Javier Castrodeza, who closed the meeting.

Somos Pacientes ( is an initiative that was launched to generate an online community of patients’ associations and people with disabilities. It already includes more than 1,700 bodies and offers offer a shared space for information, participation, training, services and collaborative work for all of these organizations.

The opening speech of FARMAINDUSTRIA’s General Director, Humberto Arnés, can be accessed through this link.

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