“The growing involvement of citizens and patient associations by public decision makers in defining the most relevant choices for healthcare certainly represents the fulfillment of one of the main innovations introduced forty years ago by the healthcare reform. The introduction of the National Health Service – which, albeit late, fully implemented art. 32 of the Constitution – has placed the person at the center of the health organization“. Like this Vincenzo Antonelliprofessor of health and pharmaceutical law at the Catholic University of the Sacred Heart, at the end of the course on the involvement of citizens by the institutions, which the expert held as part of the first edition of ‘Raise the Patients’ Voice‘, a higher education project promoted by Janssen Italia, in collaboration with the High School of Economics and Management of Health Systems of the Catholic University of Rome. The aim of the initiative, which will end in the coming weeks: to respond to the need of patient associations to communicate effectively with institutions.
“A health service called to promote and guarantee every person the fundamental right to the ‘protection’ of health in a universal waywhich intends to implement the principles of equality, universality, participation and solidarity – added Antonelli, who is also director of the postgraduate course in the Third sector and health of Altems – cannot fail to put the person in his uniqueness at the center of every public decision. and totality “. According to the teacher, the involvement of patients” leads to a change or more correctly to an inversion of perspective for public institutions: no longer decisions imposed from above, but shared and participated, which move from below and from the actual people’s needs “.
From the dialogue with citizens, Antonelli points out, “public decision-makers can in the first place certainly derive greater legitimacy for their action, bridging the distance from people, final users of health services. Secondly, patient involvement can ensure greater adherence of the organization and health care delivery to the actual health demand, thus promoting the efficiency, effectiveness, appropriateness and transparency of services. health also in relation to the use of resources. Thirdly, dialogue with citizens could help reduce, mitigate and, if possible, overcome the growing conflict that characterizes the relationship between healthcare professionals and patients and at the same time promote the safety of care “.
For the Cattolica teacher, an open and balanced exchange is desirable, which should characterize all moments of the organization of health services, from planning to providing health services, and which should nevertheless respect the different roles and responsibilities of the actors involved “. In particular, the” exchange – underlines Antonelli – should be as inclusive and transparent as possible, without mixing interests, but also smooth out information asymmetries, avoid phenomena of de-responsibility and promoting, instead, greater accountability on the part of public institutions. An exchange that today increasingly takes the forms of active citizenship, of a concrete contribution from patients, their associations and more generally from the third sector “.
When asked if the institutions are equipped to carry out an open conversation with citizens and patient associations, the expert has no doubts: “Unfortunately they are not – he replies – Except for some positive experiences, distrust of citizens, self-referentiality, secrecy, bureaucratic and formal approach appear as the characteristics that still today distinguish public decision-making processes, obstacles that can only be overcome by fueling a wide-ranging change cultural. There is a need on the part of public institutions to embrace a culture of listening and sharing, but also of the real desire to experiment with new tools and methods of participation and comparison also in the light of the technological and communicative innovation that runs through our society ” .
About the Pact for Health 2019-2021signed by the State-Regions Conference, for Antonelli “represents an important step towards an effective commitment on the part of public institutions for greater involvement of citizens and patient associations in the definition of health policies and in the organization of health services“. The Pact, he recalls,” commits the central government and the Regions to increase the ability to intercept and respond more effectively to the needs of citizens, to enhance their particular point of view and to encourage quality participation in the entire cycle of health policy through the promotion of knowledge of the assisted citizen for the implementation of effective patientcentric perspectives and the implementation of management processes of the relationship with the citizen that are substantiated in the set of information and data, organizational procedures, behavioral models, as well as tools and technologies, which are able to manage the entire relationship with the citizen. In particular, the Pact, to encourage citizen involvement, focuses above all on the enhancement of new technologies in the relationships between healthcare facilities and patients. These are objectives that, following the pandemic in progress, must be reread in the light of the NRP, which in the health sector relaunches community and neighborhood medicine and the use of new technologies “.
“Certainly – concludes the Cattolica professor – one of the most effective levers to foster the empowerment of patient associations is the creation of specific training courses, capable of providing and combining knowledge, skills and values. A training that can be translated into a concrete commitment, which allows associations to experiment and develop new participatory practices, to promote new ways of relating, dialogue, comparison and exchange in public institutions. Training that is also ‘accompaniment’ on the field. On a more general level, there is a need to promote greater information and awareness through effective, innovative, correct and truthful information and communication channels “.
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