Patient associations hope for an increasingly central role in the development of healthcare in the future. Almost half (46%) would like to weigh more in defining priority interventions to improve the efficiency of the system and bring it closer to the needs of the sick; 20% believe they can favor the doctor-patient relationship, and the same number of increasing public attention towards some pathologies. Expectations that clash, however, with the perception of not yet being listened to enough by the institutions, given that 64% trust in a greater dialogue with decision-makers.
These are the results of a Janssen survey conducted on the associations that participated in the first edition of ‘Raise the Patients’ Voice‘, a higher education project carried out by Janssen Italia in collaboration with Altems, the high school of economics and management of health systems of the Catholic University of Rome. The first cycle of the initiative officially ended today – informs a note – with a debate between Altems, Janssen Italia and some representatives of national and regional institutions, dedicated precisely to the evolution of the role of patient associations and their perspectives within of the National Health Service.
“Patient well-being is Janssen’s top priority – declares Alessandra SinibaldiMarket Access & Regulatory Affairs Director of Janssen Italia – This includes guaranteeing them the ability to be listened to and to make their needs felt in all aspects of their care pathway. Therefore we are proud of the project carried out with Altems, aimed at offering associations the skills and tools necessary to better interface with the institutions and make the patients’ voices count. This is necessary today more than ever – he underlines – to ensure that associations can be protagonists of the post-Covid healthcare that is emerging and that collaboration with institutions becomes a structured practice for them, for the benefit of the entire ecosystem. We look forward to launching the second edition of this project together with Altems, in order to increasingly support associations in putting into practice the skills acquired so far also at the local level “.
“Altems – says the director Americo Cicchetti – for many years it has decided to structure health management training also for the representatives of patient and citizen associations in Italy and abroad, through high-level training courses such as’ Raise the Patients’ Voice ‘which ends today with the delivery of diplomas to our students of this first edition. At the same time we have the fourth edition of the Master dedicated to patient associationsof which we have recently finished admissions, and the first international Master’s is about to start, dedicated to all associations that operate transversally both in individual EU countries and at central level, collaborating with institutions such as the European Commission and the European Agency for the drug Ema. It is in fact important to bring the conversation not only to the national and regional level, but also to the European level: this pandemic has given us important lessons that must not be neglected.i”.
An aspect, that of communication, that associations consider crucial in achieving their goals – continues the note – in particular to sensitize decision-makers to the topics of interest (46%) and to discuss the allocation of resources (25%). Hence the importance of training initiatives such as’ Raise the Patients’ Voice ‘. Just 2 months after the end of the courses, about half of the patient associations involved had already had the opportunity to exploit the concepts learned during the course in their activities of confrontation with the institutions.
“Having 72 people representing 33 associations was a great success in itself – he highlights Maria Teresa PetrangoliniAltems Patient Advocacy Lab Director – I was struck by the hunger for knowledge, the desire to be together and the desire to put into practice what I have learned. Continuing to train is almost a duty because the attention of the interlocutors towards participation is still too low and civic organizations are needed capable of using better institutional communication to assert their point of view and the rights of people with basic pathologies and health needs “.