It is often said, rightly so, that volunteers in health care are invaluable. And yet, today, there is a figure. Almost 20 million euros: this is the cash value of the activities carried out in 2021 by five patient associations, for a total of one million and two hundred thousand hours of work carried out by 20 thousand volunteers, 400 employees and almost 59 thousand assisted people. The estimate of the contribution made to public health is contained in report on «Enhancement of the network of allied volunteers for health»born from the idea of Europa Donna and the result of the collaboration of associations different from each other in terms of history, size and methods of intervention, but united in a project supported by Novartis di collective reporting to quantitatively measure the impact of one’s actions on the health ecosystem in Italy.
It is the National Association Against Leukaemia, Lymphoma and Myeloma Ailof the Italian heart failure association Aiscof the national association of people with rheumatological and rare diseases ApmaarOf Europe Woman Italy and the Italian Federation of Rare Diseases Let’s unite.
«It was not immediate to identify metrics and indicators suitable for the voluntary activity of the five realities observed» explained Gaia Giussani, from Pwc, the company that processed the data collected. «In 2021, the five associations raised funds for over 56 million euros through various channels, including donations (20%), 5X1000 (16%), bequests (5%) public and private tenders and sponsorships (58%). The funds were used to complement the care and assistance options provided by the health system, support research, conduct communication and advocacy activities. have been made 70,000 visits free performed by specialists e 15,000 interviews with free psychologistsfor a total of 58,000 people assisted”.
Often the value of associations and their civic activism is intangible, but “being able to quantify it is fundamental and self-measurement is an innovative element,” he said Manuela Tamburo De Bella, manager of the Agenas National Agency for Regional Health Services. «For Agenas, which has always promoted the indissoluble alliance between institutions, healthcare professionals and the protagonists of our work, the patients, this report is a recognition of the work and of the social and economic value of the associations. Agenas will support you in this direction. In the National Oncology Plan, the third sector plays an important role, not only in the scientific and treatment part, but also to sit at the decision-making table and lead where we are unable to identify aspects that only those who experience the disease on their own skin can highlight. Now the representation must be institutionalized. It is a change that we must push. The common goal is the care and sustainability of our health system”.
The participation of patients and their representatives in decision-making tables and in all stages of research is recommended by all agencies, including European ones, but it is a road that has only just been undertaken. As it also points out Pino Toro, national president of Ail«we are in the organizational phase, the institutions must equip themselves with tools to make this transition possible». Taking up the question posed in the report by Carlo Alberto Pratesi, president of the European institute for innovation and sustainability Eiis, «what the world would be like if these organizations did not exist» (p.35), Toro observes that «associations have above all the merit of having first introduced and favored this cultural change of giving the patient a voice, this was their great transgressive and cultural value».
In the context of great fragmentation, where there are many associations and they do not always collaborate, the alliance necessary for the drafting of the report also had another merit: «Shared programming helped us communicate. Comparison between organizations is an invaluable opportunity of learning and knowledge sharing. Sharing experiences and best practices in order to be able to re-propose them in one’s own field helps to optimize resources and generate new ones» he said Rosanna D’Antona, president of Europa Donna, network of 185 voluntary associations for patients with breast cancer, remembering that speaking with a single voice is an element of strength. «The next step will also be to evaluate the incisiveness at the legislative level. After that, the collaboration between associations and institutions is a classic win-win situation, where the exchange of data, indications, evaluations and priorities allows for the best possible result to be obtained» with a view to adequacy and sustainability.