SUMMARY

The associative movement of patients has been developing and consolidating more slowly in Spain than in other countries. This slowness in the implementation and professionalization of associations has been conditioned by different social phenomena, notably the existence of a totalitarian political regime, the less civic education of citizens and the great political intervention that has existed on health, the latter including the development of a health system that people assess as very good and on which they express a great satisfaction. Another characteristic of the Spanish health system is the great ignorance that people have on its functioning, together with the limited implementation in the collective consciousness of the concept of patient rights. These facts are important because increased knowledge about health issues and greater awareness of rights are two of the axes on which the creation of an association of patients turns. In this paper, we analyze these factors and others related to the same elements that have promoted a more fragmented and slower associative movement in the Spanish health field.

Patients associations are different from those of users and consumers and are structured into different types because of the interests they represent or whom they represent. These typologies allow associations to interact with each other as part of larger associations. The ultimate purpose of this all is to fulfill what is called in this work as the social function of an association. This social function includes the activities of awareness, advocacy, information, education-training, coaching, health and social services provision, social research and collection of funds, among others. The characteristics of the association determine the functioning model of the same. In order to provide some of these functions together, the Spanish Patients Forum and the University of the Patients were created. The first project is an association of associations, federations and confederations, and its motto is "the voice of the patient in democracy". Its constitution is aimed at promoting the participation of those affected by disease in the decision-making processes that involve them and at transferring formal democracy into public policy and health centers management. The goal of the University project is that of transferring the functions of quality information, competency-based training, social research and advice that are genuine to University into the people involved.

The future of patients associations is linked to changes in the model of patient-from passive to active- and to an economic environment that will promote the transformation of patients associations into social enterprises and the transition of the State into the welfare society. For this purpose, the associations will play a greater role in the health field and they will add to their culture of rights a culture of duties and obligations in order to preserve a universal free accessible health system. Finally, the rise of the Internet will promote the existence of a new partnership model based on social networks and virtual communities of patients linked around specific interests and which will take part in so many communities as the number of their interests.