The president of the Spanish Patients Forum (FEP), Andoni Lorenzo, has emphasized that the Patient Organizations Bill represents a "progress and "an important step," although he has warned that "the challenge now is to ensure that the recognition of patient organizations translates into concrete mechanisms for participation."
Lorenzo, who has reviewed the trajectory of the legislative initiative currently in parliamentary processing, has indicated that in the last year there has been "a lot" of progress. However, he has stressed that "the true objective is not only to have a regulation but to ensure that this allows the experience and knowledge of patients to be part, in a structured and effective manner, of the decisions that affect their health."
As he has pointed out, the evolution of the associative movement demands that the text reflects its role under criteria of equality with the Administration and healthcare professionals. "The maturity of our organizations requires that the law regulates our participation under a principle of parity with the Administration and professionals," he has stated, insisting that the time has come to ensure a stable presence "in areas of great impact, such as the evaluation of health technologies." In his opinion, the future law "comes to settle a debt" with patient entities.
In the same line, the director of the FEP, Raquel Sánchez, has stated that "for the Patient Organizations Law to be useful, it must translate into legal security that safeguards our participation." Sánchez has intervened in the day "The Patient Organizations Law: horizon or reality?", organized by the Forum in Madrid, where she has recalled that the regulatory framework already recognizes the "fundamental role" of organizations.
Professionalization and stable funding
"Now, the regulation must provide the legal tools so that this voice is binding and visible throughout the decision-making process," Sánchez has added. She has also argued that the law should incorporate clear criteria for the representativeness of entities, promote their professionalization, and establish a stable funding system that guarantees independence, transparency, and sufficient resources to develop their work.
The wording of the project, which for the first time specifically recognizes the uniqueness of these organizations, provides for their participation in the governance of the National Health System (SNS). This aspect is interpreted as an opportunity to reinforce the role that patient associations have been playing for years. However, from the FEP it is considered necessary that the text also bets on a registration mechanism that allows identifying the entities and setting objective parameters of representativeness.
Likewise, during the meeting, the importance of promoting measures that drive the professionalization of organizations, advance towards a stable and transparent funding model, and strengthen their presence in the main participation and decision-making bodies of the health system has been highlighted. These ideas have been debated at the event, in which the Secretary of State for Health, Javier Padilla; the spokesperson for the Popular Parliamentary Group in the Health Commission of the Congress of Deputies, Elvira Velasco; the president of the Spanish Association of Health Law (AEDS), Ofelia de Lorenzo; and the president of the Spanish Group of Cancer Patients (GEPAC), Begoña Barragán, among others, have participated.