The Spanish Association of Orphan and Ultra Orphan Drug Laboratories(AELMHU) has presented its contributions to the Draft Bill on Patients' Organizations.
From our association, we welcome with interest this draft bill of the Ministry of Health to provide legal and functional recognition to these entities, whose work is essential in the construction of a more inclusive, participatory and focused on the real needs of patients health system.
For this reason, we consider it essential for patient associations to occupy a relevant place in the governance of the healthcare system. It is necessary to recognize them as collaborating entities of the National Health System, with the capacity for active participation in the definition of strategies, plans and regulations that directly affect the people they represent, so that the patient ceases to be a passive recipient and becomes the protagonist of change.
RECOMMENDATIONS
Following the analysis of the draft bill, the following are a series of observations and proposals that may contribute to enriching the regulatory text and strengthening the role of patient organizations in the healthcare system:
- Institutional recognition of patient organizations as key agents in the healthcare system.
- Effective participation in decision-making through structured participation in consultative and decision-making bodies of the health system.
- Training and professionalization through measures that promote the capacity building of patient organizations.
- Promotion of public-private collaboration between patient organizations, private entities and public administrations as a driver of innovation and improvement in health care.
