Care and attention to patients in the areas of onco-hematology and neuroscience
Roche Foundationwhich has always been committed to supporting and assisting patient associations in the delicate task of supporting patients and caregivers who face a path of care, with the 4th edition of the Call “Roche Foundation for Patients” continues in its intent and awards 7 innovative projects presented by Milanese associations: ACTO-Alliance against ovarian cancer Onlus, Europa Donna Italia, ROPI-Network oncology patients Italy and Salute Donna Onlus for the onco-hematology area and specifically for female cancers; APS Associazione PaLiNUro and APS Italian Association of Chronic Myeloid Leukemia Patients again for onco-hematology but respectively for urothelial tumors and haematological neoplasms; Alzheimer Italy Federation with a neuroscience project on dementia and Alzheimer’s disease.
The ACTO Onlus project, a national network of patient associations engaged in the fight against ovarian cancer and gynecological cancers, consists in the digitalization process of the network through the new portal www.acto-italia.org and aims to improve the provision of services and increase management efficiency of the individual associations belonging to the network. ACTO wants to offer an information point entirely dedicated to all gynecological cancers and a space open to contributions and initiatives from Italian and foreign clinicians, institutions, researchers and other patient associations, and to host advocacy actions in support of the rights of Italian patients suffering from gynecological cancer. Nicoletta CeranaPresident of ACTO Onlus and coordinator of the project, declares: “With our new portal we want to strengthen the network of Associations by improving the quality of services offered to Italian women affected by gynecological cancer and, at the same time, create a common platform with which to give voice to patients and improve the prevention, diagnosis and treatment of these neoplasms still little known by women themselves and often the object of social stigma “.
Europe Woman Italy, movement for the rights to the prevention and treatment of breast cancer, with the project ‘Europa Donna Italia Academy-Tele-Senolgia’ wants to start an online training course on new tools for managing the path of prevention, diagnosis and treatment of breast cancer. The project was coordinated by Francesca D’Antona, who says: “The original title was ‘Quel little good … that Covid left us’ since the pandemic period made us quickly learn to socialize and work with zoom , skype, meet, tools that have remained in daily use and have become essential. Far from being a training course on technicalities, Tele-senology wants to be an opportunity to reflect, learn and learn how to use the tools available to citizens and patients to ‘skip the line’ and have a conscious vision of the change that we are living “.
Rosanna D’Antona, president of Europa Donna Italia, adds: “The NHS is trying to reorganize itself despite the still countless difficulties. Precisely for this reason, the first 8 billion for healthcare, provided for by the PNNR, will be used for telemedicine, community homes and hospitals, home care and hospital modernization and safety. On the whole peninsula, efforts are being made to strengthen telemedicine and, more generally, the facilitation of remote management of doctor-facility-patient relationships. Within this new context, the patient affected by breast cancer must be enabled to actively participate in digital services and new ways of interacting with medical staff and hospitals and health facilities “.
The associations
‘We, for a life beyond cancer’ is the project of ROPI-Italy Patient Oncology Network which gives a voice to patients and caregivers who stand by people with oncological pathologies, dedicated to women survivors with breast cancer and their needs (clinical, private, professional and socio-relational) in the post-care for a rapid reintegration into the tissue social. Thanks to specific focus groups, represented by 60 women of heterogeneous age and area of residence, a multimedia tool will be developed that can be used on the main social channels of patient associations, health centers, institutions, which will make it possible to identify the needs of women, guiding their paths and decisions with a gentle stimulus (nudge theory), in order to obtain virtuous behaviors with advantages both for women and for the community.
The project was coordinated by Dr. Giuseppe Deledda, Psychologist, Psychotherapist and Psychoncologistwho comments: “Our project aims to actively involve and listen to women who have overcome breast cancer, or who are experiencing a condition of metastasis, in order to develop a tool that facilitates the search and obtaining the information referred to the woman needs “.
“Thanks to surgical and therapeutic advances, the survival rate among women affected by breast cancer has grown to reach a record figure of 90%, compared to 40% in 1970 – declares Stefania Gori, President of ROPI. Those who today have left the disease behind have, in most cases, the same life expectancy as people of the same age who have never had a tumor, therefore they have the full right, even at a family, emotional, social level. and work, to return to a normal life. Treatments for those who have overcome cancer are in fact a new branch of oncology that requires the development of appropriate and specific follow-ups and ad hoc care and rehabilitation interventions (physical, psychological and social) to support social reintegration and maintaining a correct and balanced lifestyle. Without forgetting all women with metastatic disease who have specific needs related to their life stage and the characteristics of the woman “.
Women’s Health Onlus, a voluntary association dedicated to the promotion of health education, to the prevention of oncological diseases and to the support of cancer patients in their care path, with the project ‘Telemedicine for a free second clinical opinion on female tumors (breast / ovary) : what advantages for patients and for the health system ‘intends to provide a teleconsultation service at no cost for patients, thanks to the extraordinary volunteering of a clinical network expert in oncological issues, a network that can give a second clinical opinion with respect to a diagnosis tumor. The project was coordinated by Paolo Ranieri, Bioengineer, and Lella Gasparro, graduated in biological sciences. On behalf of both of us, Paolo Ranieri comments: “The Covid-19 pandemic has made the concepts of telemedicine and remote video communication familiar to the population: the interpretation of Salute Donna is of absolute value and originality.capable of providing a simple solution, with high added value and free of charge, unprecedented for a Patient Association and easily replicable “.
APS Associazione PaLiNUro (Patients Free of UROtelial Neoplasms), the only Association in Italy that deals with patients suffering from bladder cancer, with the project ‘URO-H-ADVISOR 2.0’ provides an online platform which allows the patient to orient himself in the choice of hospital, based on the reviews and judgments of other patients suffering from the same pathology, and to find practical and useful information to not feel alone anymore. Edoardo Fioriniproject coordinator, founder and president of the association, who personally experienced the disease says: “Having understood the need of patients to orient themselves in their choices, my dream was to get to have a sort of ‘TripAdvisor’ of hospitals for the treatment of bladder cancer and now that the platform is a reality, the goal is to populate it with all the experiences, evaluations and judgments of the patients themselves “.
Italian Association of Chronic Myeloid Leukemia Patients-APS, born from patients for patients with the intention of promoting treatment in all its shapes and sizes, has won with the communication project ‘Empowerment of the patient with haematological neoplasms. Knowledge and awareness improve the quality of life ‘, which through digital tools such as videos and podcasts aims to train patients with haematological malignancies on issues related to their health and their therapy to improve their quality of life. Nicoletta Re, coordinator of the project, co-founder of the association of which she is vice president, declares: “The project was born from the 2019 ‘Le Voci count’ survey which involved 850 patients with haematological cancers throughout Italy. The objectives to which it aims are the empowerment of the patient through knowledge and awareness, a better relationship with his support network (associations, specialists and general practitioners), the realization of the person in every aspect: work, personal, health . Thanks to Fondazione Roche we can not only train patients but above all make them aware of their path of care and return to life, generating a positive impact on people, their families and the community and supporting the Health System thanks to the way the project is implemented. , ie the digital one “.
‘What they do not teach at school: forming a friendly generation of people with dementia’ is the title of the project presented by the Alzheimer Italy Federation, which intends to create an information and training course with traditional face-to-face lessons alternating with online training on dementia. dedicated specifically to high school students with the aim of eliminating the prejudices and discrimination that make dementia one of the most feared and misunderstood diseases of our times. The Federation is the sole representative for Italy of Alzheimer’s Disease International (ADI) and the largest national non-profit organization (it coordinates 45 local associations dealing with dementia and 37 Friendly Communities of People with Dementia) dedicated to promoting scientific research on the causes, the treatment and assistance for Alzheimer’s disease and dementia, the support and protection of the rights of patients.
The coordinator of the project and general secretary of the Federation, Mario Possenti, comments: “Every day we strive to erase the stigma against people with dementia and their families. Involving schools is a fundamental step for us: the new generations are the future and with this project we want to provide them with the knowledge and tools to bring about a real change that leads to an ever greater inclusion of people with dementia “.
Gabriella Salvini Porro, president of the Alzheimer Italy Federation, he adds: “Being friends with people with dementia means listening, informing, raising awareness and speaking out for the rights of these people, initiating a process of social change to create a society where they can feel welcomed and completely included. This has been our dream since in 2016 we launched the ‘Community Friend of People with Dementia’ project in Italy and since then, every day we have been listening to citizens who want to give life in their territories to more attentive and inclusive communities and initiatives for people with dementia: with this new project we are taking a further step forward with the aim of training the adults of tomorrow “.
This call has awarded a total of 22 projects from all over Italy, candidates as well as for the areas onco-hematology and neuroscience-ophthalmology, for rare diseases. The projects, which received a total funding of 500 thousand euroshave been selected and evaluated by VITA Impresa Sociale, as external and independent partner of Roche Foundation, on the basis of various criteria: clarity in the description, impact of the expected benefits for families, patients and communities, collaboration and networking with other Patient Associations, Foundations and / or national and local Institutions, sustainability and collaboration with the Health System, and public institutions, innovation and attention to the digital issue, adequacy of dedicated resources, transferability and replicability of the proposed service.