Ten associations distributed throughout the region, to guarantee and protect the approximately 5,000 women, patients and non-patients, who live in Puglia. It is the Apulian delegation of Europa Donna, the federation of patient associations active throughout Europe, which presented itself, together with the representatives of Aiom and Senonetwork and the coordinators of some Breast Units, from Puglia to the regional authorities. “Together these associations represent an important link between patients, clinicians, hospitals and institutions, carrying out work that is sometimes complementary to the welfare of the Region”, said Rosanna D’Antona, president of Europa Donna Italia.
The associations have submitted numerous specific requests to the Institutions with the aim of improving adherence to screening, the quality of care and life of patients in the Breast Units in the area. The requests are also part of the results that emerged from a survey conducted for Europa Donna Italia by researchers from ALTEMS (High School of Economics and Management of Health Systems of the Catholic University) and which involved the coordinators of the Breast Units and the collaborating Associations with them. It was highlighted that at the network level the interaction between the various regional Breast Units is still scarce due to an IT system for data collection that is not yet homogeneous and a centralized organization of external services (oncogenetics and preservation of fertility) . “The associations make a fundamental contribution in bridging the gaps in the regional system and in the health organizations, with respect to the common goal of the quality of care and life of cancer patients”, underlined Raffaele Piemontese, vice president of the Puglia Region.
“The comparison with civic interlocutors and with patient representatives is always a resource for the health administration”, continued Giovanni Gorgoni, director of AReSS Puglia. “Every process of change and – even more today – of digital transformation must necessarily start from the user experience and the ideas received today by the associations are a demonstration of this. With Europa Donna, the Puglia Region has an ancient association that has been the driving force behind the development process of the regional Breast Units. The path continues ”.